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Paediatric programs and developments in the treatment of paediatric disorders. Specialized programs offered on an outpatient basis. Developments in the treatment of neurodegenerative disorders, traumatic brain injury. Social work programs helping patients and families AUGUST 2015 | VOLUME 28 ISSUE 9 | address the impact of illness.

Canada's Health Care Newspaper

INSIDE Safe Medication .................................12 From the CEO’s desk .........................13 Evidence Matters ............................... 14 Legal Update ...................................... 17 Nursing Pulse .....................................23

Unravelling the mystery of

Lyme disease Why Canada needs to do more By Sarah Quadri Magnotta

See page 7





A case for kids:

Expanding paediatric care in northeastern Ontario

By Dan Lessard

hat is the most common health care issue facing children in Northeastern Ontario? It’s not obesity, diabetes, allergies, asthma, autism, Attention Deficit Hyperactive Disorder, or Fetal Alcohol Spectrum Disorder, although rates for all of these chronic conditions are greater in Northeastern Ontario than the national average. The most prolific health care ailment affecting children is sexual assault, according to paediatric expert Dr. Nicolas Steinmetz, Associate Professor of Paediatrics at McGill University, and the Chair Emeritus of the Montreal Children’s Hospital Foundation. Dr. Steinmetz shared that startling fact at this year’s Annual General Meeting of Health Sciences North (HSN) in Greater Sudbury, and he challenged health care planners in Northeastern Ontario to do more for children’s healthcare in all areas, but particularly sexual assault. It’s a message HSN is taking to heart. Ironically, enhancing services for children who have been sexually and physically abused is a key component of HSN’s proposal before the North East Local Health Integration Network (NE LHIN) to expand the North Eastern Ontario Health Centre for Children (NEO Kids), which is HSN’s centre for paediatric outpatient care. The proposal to expand NEO Kids includes the creation of a Child Advocacy Centre, which will enable HSN to provide more acute care and counselling to children who have been physically or sexually harmed. Currently, HSN provides acute care services (including forensic examinations) and follow-up counselling to children where cases of sexual and physical abuse have been verified by police or child protection services. Last year, HSN’s Violence Intervention and Prevention Program (VIPP) dealt with 100 cases of child and youth sexual and physical abuse. “We know there’s many more cases of sexual and physical abuse of children because it is one of the most under-reported crimes,” says Nancy Horan, Manager of


We believe that children are not small adults, and the health care system can’t view or treat them that way. Kids view the world differently. They have different needs. When they come for healthcare, they need to be in a setting that reflects who they are.

Dr. Sean Murray, Paediatrician and Medical Director of the North Eastern Ontario Health Centre for Kids (NEO Kids) VIPP. “Children often don’t know where to turn or who to turn to for help, especially if the abuser is in a position of power over them, so incidents are vastly under-reported. Also, at this point we don’t have the resources to help any more children than we already do. We aren’t providing ongoing support for children where abuse is only suspected, not confirmed. And we’re not capturing cases of neglect. We could help more kids with more resources, and that’s the proposal we have on the table.” The proposed Child Advocacy Centre at an expanded NEO Kids would change that, according to Horan. The Child Advocacy Centre would bring together, in one central location, more resources and expertise for children who have been sexually or physically harmed. The proposed Child Advocacy Centre could include onsite partners such as the Children’s Aid Society, Greater Sudbury Police, and

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victim protection and children’s mental health agencies. “Children and families are often faced with having to visit more than 10 different professionals in different agencies from the time that child maltreatment is disclosed or discovered until the time that it reaches the court system,” adds Horan. “ Professionals from various agencies in the community, all of whom share the same goal of helping and supporting children and families, often work in isolation from one another. But the Child Advocacy Centre we’re proposing would serve as a ‘one-stop’ location for collaborative care in a safe, child friendly environment that deals exclusively with children.” It is this approach to the care of children who’ve suffered sexual or physical abuse that underpins the entire NEO Kids philosophy of children’s healthcare, according to Dr. Sean Murray, the Medical Director of HSN’s Family and Child Program and the Lead Paediatrician for NEO Kids. “We believe that children are not small adults, and the health care system can’t view or treat them that way,” says Dr. Murray. “Kids view the world differently. They have different needs. When they come for health care, they need to be in a setting that reflects who they are. What happens now is we provide children with care in places that were designed by and for adults, and often side-by-side with adults. That’s not optimal care for children and their families. The other pillar of NEO Kids is that children should be treated as close to home as possible. We can and should keep medicallynecessary travel to a minimum for kids, because travelling to another part of the province for care is emotionally, physically

and financially straining for children and their families. So by expanding NEO Kids, we hope to dramatically reduce the number of children who have to leave northeastern Ontario to get outpatient care.” HSN has put before the NE LHIN a proposal to build a 40,000 square foot expansion to the current NEO Kids facility, at a cost of approximately $55 million dollars. The proposal has received letters of support from hospitals across northeastern Ontario as well as Sick Kids Hospital and the Children’s Hospital of Eastern Ontario. The Board of Directors at the NE LHIN wants to see a strengthened business case for the project. HSN has been invited back to the LHIN Board in the fall of 2015 to pitch an updated proposal and the LHIN has offered to work with HSN to make the proposal successful. “We’ll work with the LHIN to provide whatever further information it requires so that we can move this proposal along to the Ministry of Health,” adds Dr. Murray. “We do feel the time is right to expand children’s outpatient care in northeastern Ontario because we’re already bursting at the seams and demand for our services is expected to increase anywhere from 20 to 40 per cent in the next decade, and most of that is for children’s chronic diseases where we have some of the highest rates in Ontario, if not Canada. I became a paediatrician because as a child, I had to travel frequently out of Sudbury to get the care I needed, and I’m doing everything I can to ensure as many children as possible can avoid what I had to go through as H a kid.” ■ Dan Lessard is a Media and Public Relations Officer at Health Sciences North/ Horizon Santé-Nord.

In Brief


Ontario’s doctors advocate

plan for more equitable approach to primary care Ontario’s doctors know the benefits of working in partnership with allied health professionals like dieticians and nurses to provide team-based care to patients and they believe everyone who needs access to that kind of care should have it. Currently, just one third of Ontarians have direct access to publicly-funded allied health professionals like registered dieticians, social workers, nurse practitioners, and mental

health workers. A recent Ontario Medical Association report proposes a way to change that through an integrated approach to primary care where those patients not presently enrolled in, but who would most benefit from, a multi-disciplinary team approach would be able to access it. “Ontario’s doctors believe everyone deserves equitable access to the care they need when they need it,” says Dr. Mike

Toth, President, Ontario Medical Association. “We believe our proposal is an innovative solution for healthcare that makes use of current resources while improving patient care.” Some of the specialized programs available in these models of practice include healthy living programs such as smoking cessation; senior’s programs; diabetes education programs; lung health

Kids’ chickenpox vaccine led to 70 per cent drop in doctors’ visits Introduction of the chickenpox vaccination program for children in Ontario was associated with a 71 per cent decrease in doctor office and emergency room visits and a 59 per cent decrease in hospitalizations for this disease, new research from Public Health Ontario (PHO) has shown. Chickenpox is a common childhood illness with the potential for serious complications, even among healthy children. In a new paper being published in PLOS One titled Twenty years of medicallyattended pediatric varicella and herpes zoster in Ontario, Canada: a populationbased study, Anne Wormsbecker worked with PHO colleagues to examine data on chickenpox and shingles from the past 20 years, comparing the number of Ontario doctor office visits, emergency de-

partment (ED) visits and intensive care unit (ICU) admissions for children aged 18 and younger over three time periods – pre-vaccine period (1992-1998), privately available vaccine (1999-2003) and the public vaccination program (2004-2011). Wormsbecker is a medical epidemiologist at PHO, a pediatrician in Toronto and the lead researcher on the study. “With this large, population-based study, we have shown that medically-attended chickenpox decreased significantly during the 20-year study period, particularly since the varicella vaccine became publicly funded in Ontario,” says Wormsbecker. “The results also suggest a ‘herd immunity’ effect, as we saw decreases in chickenpox incidence in both age groups who were eligible to receive the vaccine, as well as older age groups, who would

Failure to take meds leads to worsening health outcomes and increased costs to healthcare Canadians are not taking their medications as prescribed and, in some instances, not even filling their prescriptions, according to national survey results released by the Canadian Pharmacists Association (CPhA). This disturbing trend spells bad news for Canada’s cashstrapped health care system due to repeat visits to clinics and emergency rooms, recurring illnesses and worsening medical conditions. According to the Abacus Data survey conducted earlier this year, 30 per cent of Canadians reported they stopped taking medication before they were advised to and about one in four reported not filling a prescription they were given or took less medication than prescribed. Of those Canadians who did not take their medication as directed or stopped taking their medication, 45 per cent said they felt they no longer needed to take it; 18 per cent said it made them sick or they didn’t think it was working well;

while eight per cent said they couldn’t afford to keep taking it. “Canadians face a multitude of barriers when it comes to effective medication use,” says Carlo Berardi, Chair, Canadian Pharmacists Association. “While being able to afford their medications is first and foremost a fundamental necessity, we also need to ensure that Canadians are supported with the health advice and services pharmacists can provide to improve medication use and adherence.” Evidence shows that when pharmacists are involved in chronic disease management, like diabetes, hypertension and heart disease, health outcomes are improved. Each year, Canada’s 39,000 pharmacists fill more than 600 million prescriptions. They are ideally positioned to encourage optimal medication use, improve the management of chronic diseases, increase health promotion efforts and contribute substantially to reducing health H care costs. ■

not have been eligible for vaccine. These older groups are benefiting indirectly from the vaccination program; those susceptible to chickenpox are not getting ill because less of the virus is circulating in the community, resulting in less opportunity to become ill from this infectious disease.” Between 1992 and 2011 (2010 for emergency department visits), Wormsbecker and PHO colleagues observed 600,208 physician office visits, 55,472 ED visits, and 2,701 hospitalizations for chickenpox among Ontario children. They found that the incidence of office visits due to chickenpox declined from a high of 25.1/1,000 in 1994 (pre-vaccine availability) to a low of 3.2/1,000 in 2011 (publicly funded vaccine program). Emergency department visits and hospitalizations followed similar patterns of decreasing rates later in the study period. Doctor office visits for chickenpox saw significant year-over-year decreases for all groups of children aged 18 and younger. As well, chickenpox-associated skin and soft tissue infections declined significantly in children younger than 12, and rates of ICU admissions decreased significantly for children younger than one year of age over the study period. For children 5- to 17-years-old, shingles office visits decreased while ED visits increased. There was also a small, nonH significant decrease in hospitalizations. ■

programs; and mental health programs. Research has shown a focus on primary care not only improves patient outcomes, but it reduces upstream costs like hospital, drug and diagnostic services. Given the fiscal restraints facing the health care system in Ontario, Ontario’s doctors believe this approach would not only improve patient care but also better utilize current system H resources. ■

50,000 participants in Canada’s largest study on aging Launched in 2010, the Canadian Longitudinal Study on Aging (CLSA) is a national study that will follow 50,000 Canadians, aged 45 to 85, over 20 years. Its aim is to find ways to improve the health of Canadians by better understanding the processes and dimensions of aging. Over the past five years, the CLSA research team has implemented the study and completed recruitment. All the participants have now completed baseline assessments including the telephone interviews, face-to-face interviews, as well as visits to specially designed data collection sites. The data collected is being made available to researchers and policy makers studying issues such as hearing loss, injuries, chronic diseases and neurological conditions. Information being provided by study participants will be used to improve understanding of how we age, and ultimately promote healthy aging for all. The study is a Canadian Institutes of Health Research (CIHR) initiative. It was launched through grants from the Government of Canada through CIHR and the Canadian Foundation for Innovation, as well as several provinces, universities and H other partners. ■

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UPCOMING DEADLINES SEPTEMBER 2015 ISSUE EDITORIAL AUG 7 ADVERTISING: DISPLAY AUG 21 CAREER AUG 25 MONTHLY FOCUS: Emergency Services/Critical Care/ Trauma/Emergency Preparedness/ Infection Control:

Innovations in emergency and trauma delivery systems. Emergency preparedness issues facing hospitals and how they are addressing them. Advances in critical care medicine. Programs implemented to reduce hospital acquired infections. Developments in the prevention and treatment of drugresistant bacteria and control of infectious diseases.


Developments in patient-safety practices. Advances in the measurements of patient outcomes and program metrics. New treatment approaches to mental health and addiction. An overview of current research initiatives. + Health Achieve Annual Conference Guide Supplement


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Quality maternal and newborn care By James Meloche

here are many policies, programs and initiatives in Ontario aimed at improving the experience and health outcomes for women and newborns, many of which have been designed and championed by the Provincial Council for Maternal and Child Health (PCMCH). There are also a few regional perinatal networks in Ontario making important efforts towards improving local maternal and newborn systems of care, and there have been collaborative policy and planning efforts that have attempted to systematically address improvements in the maternal newborn delivery system. What makes the new provincial effort led by PCMCH different is that our comprehensive “quality by design” approach aims to revitalize maternal and newborn services through innovation, integration, and a commitment to patient-centered, team-based approaches. This strategy presents a unique opportunity to implement and test new interdisciplinary models of low-risk care in various settings, from home, primary care, clinics, and hospitals. According to the Ontario Maternity Care Expert Panel Paper (2006), essential maternity care services for all communities include: • Early and regular prenatal care • Laboratory services for primary maternity care • Postnatal care and lactation support • Prenatal education • Birth services for healthy women • Public health services • Well-woman and newborn care • Bereavement services • Timely stabilization and transport to/ from additional services • Funded interpretation services The problem is that it’s unclear whether these services are equally accessible to all women in Ontario, particularly those in rural and remote regions where obstetrical services are being removed or reduced due to budgetary constraints or



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availability in maternity-related health human resources. There is also an unmet demand for Midwifery services across Ontario. Low-risk women are less likely to require intense or invasive interventions during the course of their pregnancy, and benefit from timely availability of family-centred health care services including pre-pregnancy counseling, early and regular prenatal care, education, low-risk intrapartum services and postpartum maternal and newborn care. The aim of the PCMCH Low Risk Maternal Newborn Strategy is to identify the existing gaps in available services across Ontario and develop recommendations to help close them. Unfortunately, while stakeholders universally agree that maternal patient choice and access to their preferred provider should be a public policy norm, we haven’t really measured how we’re performing in this regard. Nor do we fully understand the barriers to achieving greater equity of choice and access for all of Ontario’s expectant parents. In order to improve choice, we need to look at system, local and inter-professional barriers and enablers. At the system level, our strategy will include the development of a Health Human Resources Plan and capacity plan. At the professional level, we’ll support frank, solution-orientated conversations between health care professionals focusing on patients’ needs. At the local level, we’ll determine how to make access to close-to-home, high-quality maternity and newborn care achievable. Regardless of solutions, we need to promote informed choice. Expecting parents should be given the information they need about their provider options, and the type and quality of care they should expect to receive. They also need to be given informed options on other matters related to maternal care, such as prenatal screening and post-partum care. An effective Low Risk Maternal and

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Newborn Strategy should achieve the following objectives: • Increased choice for women on where and how they will deliver. • Equitable access to care as close to home as possible. • Increased inter-professional collaboration and the realization of full scope of practice for health care providers. There are challenges in the achievement of a comprehensive strategy, and the task of the PCMCH expert panel will be to clearly outline each one. But we can’t let those challenges become barriers to change. To improve access to patient-driven maternity services we will be engaging the most important stakeholder – patients – to help us design innovative models of care, along with an expert panel of health care leaders who are dedicated to finding solutions and building trust amongst all providers. Research has shown how important local maternity care services are to the overall performance of local health systems, and to the health of women, children, families and the communities where they live. Our hope is that we can change the dialogue from how to sustain and improve patient-centred maternal care services, to a dialogue where maternity and newborn services are recognized as a key cornerstone to the sustainability of communities across Ontario. Done properly, a patientcentred, low-risk maternal and newborn care strategy can improve the health of the population and patient experience, H and control the costs of care. ■ James Meloche is the Executive Director for the Provincial Council for Maternal and Child Health. He will be presiding over a session on low risk maternal and newborn strategies in Ontario designed to explore solutions for Ontario’s mothers and babies at HealthAchieve in Toronto on November 3, 2015.

Bobbi Greenberg,

Manager, Media and Public Relations. Mississauga Halton Community Care Access Centre

Sarah Quadri Magnotta,

Senior Writer/Communications Specialist Humber River Hospital

Dr. Cory Ross,

B.A., MS.C., DC, CSM (OXON), MBA, CHE Dean, Health Sciences and Community Services, George Brown College, Toronto, ON

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Ontario Hospital Association


Hospital News is published for hospital health-care professionals, patients, visitors and students. It is available free of charge from distribution racks in hospitals in Ontario. Bulk subscriptions are available for hospitals outside Ontario. The statements, opinions and viewpoints made or expressed by the writers do not necessarily represent the opinions and views of Hospital News, or the publishers. Hospital News and Members of the Advisory Board assume no responsibility or liability for claims, statements, opinions or views, written or reported by its contributing writers, including product or service information that is advertised. Changes of address, notices, subscriptions orders and undeliverable address notifications. Subscription rate in Canada for single copies is $29.40 per year. Send enquiries to: Canadian Publications mail sales product agreement number 40065412.




SickKids’ CALIPER Project

fills gaps in paediatric reference intervals By Michelle Nieuwesteeg

he Canadian Society of Clinical Chemists (CSCC) selected SickKids’s CALIPER project to receive the 2015 Inaugural Award for Innovation in Laboratory Medicine. The CALIPER team and the principal investigator, Dr. Khosrow Adeli received this award for their work in implementing the CALIPER project. CALIPER (Canadian Laboratory Initiative on Paediatric Reference Intervals) is a nation-wide research initiative aimed at improving accuracy in interpretation of paediatric laboratory test results and diagnosis of paediatric diseases. Since 2008, the CALIPER team has been working to close the major knowledge gaps that exist in reference values for markers of paediatric diseases. To interpret laboratory test results, physicians depend on reference information to interpret laboratory test results, which provides the range of values expected for healthy individuals. Laboratory test results that fall within this range are considered ‘normal’, whereas values above or below this range indicate an abnormal result and a need for additional follow-up and/or treatment. Many people would be surprised to learn that reference information has been sorely lacking for the paediatric population. As a result, the use of adult reference values to interpret paediatric tests is often common practice. Children and adolescents undergo unique physiological and hormonal changes over the course of development, and the ‘normal’ levels of many biomarkers vary significantly between paediatric and adult populations. Thus, the use of adult reference information for paediatric tests is inappropriate, and may lead to misdiagnoses, unnecessary medical follow-up or treatment, and can subsequently contribute to increased health care costs. Dr. Adeli and the CALIPER team have collaborated with various paediatric hospitals across Canada to develop a comprehensive database of paediatric reference values. To achieve this goal, CALIPER has successfully recruited and collected blood samples from over 8600 healthy community children and adolescents, representative of Canada’s diverse multi-ethnic population. Using these samples, CALIPER has established age- and sex-stratified reference values for over 100 biomarkers of paediatric disease. This information can be used by physicians to interpret standard laboratory tests, as well as test results from a variety of clinical sub-specialities, including endocrinology, cardiology, and nephrology. CALIPER reference values have now been implemented clinically at the Hospital for Sick Children, as well as at a growing number of other paediatric centres across Canada, the USA, and worldwide. The development of the CALIPER reference interval database was an enormous undertaking and achievement, and CALIPER is now regarded as a flagship study in the field of paediatric laboratory medicine. The project now serves as a model for other countries, such as China and Indonesia, which are adopting similar initiatives. The CALIPER team is now working on broadening the applicability of the reference interval database to all paediatric centres


nationwide, regardless of the analytical instrument they use. The team plans to further expand the CALIPER database by continuing to update paediatric reference values for existing tests, as well as developing new reference values for novel paediatric biomarkers. To improve accessibility to this important data, the CALIPER database has been made freely available online at www. The reference values are also easily available and accessible to physicians through a downloadable app, available for iPad/iPhone from the iTunes store and for Android through Google Play. This innovative technology allows physicians to have the information at their fingertips, with the hope that it will contribute to ease of interpretation and improved clinical accuracy and speed.

The CSCC has recognized the CALIPER team for their innovation in strategic planning, development and implementation of laboratory services. More information about the CALIPER project can be found at www.caliperproH ■ Michelle Nieuwesteeg, PhD is the Clinical Research Project Coordinator, CALIPER.

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Paediatric Short Stay Unit improves access to care By Priscilla Hsu n January, North York General Hospital (NYGH) introduced a Paediatric Short Stay Unit to provide young patients with timely access to acute care for up to eight hours. The most common referrals to the Paediatric Short Stay Unit are for respiratory infections, jaundice, asthma and gastroenteritis. Family physicians and paediatricians in the community can contact the hospital for a paediatric consult and directly refer a patient to the short stay unit. Patients can also be referred through the Charlotte & Lewis Steinberg Emergency. This process ensures timely assessment, treatment and testing in a child friendly space, with clinicians who specialize in paediatric care. “We’ve seen 230 patients in the Paediatric Short Stay Unit in only three months, and many parents shared they were really happy with the process, the care and just having these beds available to the community,” says Heather Su, Registered Nurse on the Child and Teen/Paediatric Short Stay Unit at NYGH. “Coming to a hospital can be a scary experience for young children. Being on the Paediatric Short Stay Unit can offer families a more comfortable and quiet environment, with tools

have the added benefit of reducing Emergency Department visits and improving patient flow.” Dr. Kanani says 80 per cent of referrals have come directly from the community; many of those would have come through the Emergency Department if the Paediatric Short Stay Unit was not available.


The most common referrals to the Paediatric Short Stay Unit are for respiratory infections, jaundice, asthma and gastroenteritis. The paediatric short stay beds improve the care experience for young patients and their families at North York General Hospital. and comfort measures for children available on the unit.” Currently, there are four paediatric short stay beds on the Child and Teen Unit at North York General. “We know the paediatric short stay beds can significantly improve the care

experience for our young patients and their families,” says Dr. Ronik Kanani, Chief of Paediatrics at NYGH. “This initiative is really about making sure our paediatric patients are getting the right care, in the right place, at the right time. From an organizational level, these beds

The success of the Paediatric Short Stay Unit can be attributed to the partnerships between NYGH and the family health teams in the community, and the continued collaborative efforts between the hospital’s Child and Teen Program and the H Emergency Department. ■ Priscilla Hsu is a Communications Officer at North York General Hospital.

OPSEU Health Workers Working for your community HOSPITAL NEWS AUGUST 2015



Focus F ocus


Cover Story

Unravelling the mystery of Lyme disease: Why Canada needs to do more By Sarah Quadri Magnotta


ian Michelsen is a rising star. Fifteen years ago, he was the toddler who burst out from behind the curtains singing Elvis’ Viva Las Vegas. As a young boy, he played the lead role in Oliver in his birthplace of Bermuda, before moving with his family to Toronto five years ago. Now, as a 17 year-old high school student, he’s a gifted singer and dancer, and attends the renowned Etobicoke School of the Arts. He works as a professional actor and has appeared in numerous high profile television programs, including Murdoch Mysteries and Flashpoint. In short, Rian is more determined than ever to realize his dreams. But last year those dreams were almost destroyed by a debilitating disease that went undiagnosed for several months. “He couldn’t get out of bed, he felt his brain shaking at night, had floaters in his eyes, he couldn’t walk and every time he stood up he felt like he was going to fall over,” explains Tanis Michelsen, Rian’s mother. A series of blood tests revealed that Rian was reactive to the Epstein-Barr virus, had a very low white blood cell count and was

low in vitamin B12. His family physician suggested Rian take vitamins and rest. He did that but still didn’t feel well enough to rehearse or perform and came home every day after school exhausted. “We were frustrated and upset going to many specialists, having blood tests, MRIs and not getting any answers,” says Tanis. She remembers one specialist saying to Rian, “If you don’t want to go to school, you need to have a better reason.” And another specialist who, although extremely kind, professional and caring, chalked Rian’s symptoms up to a “severe case of anxiety.” “Here is my son who has always been so grounded and active; he had never been run down like this (or anxious for that matter), so to see him not be able to participate in school and have no explanation for it was awful. Trying to find out what was happening was impossible.” That’s when Tanis Michelsen decided she needed to look beyond the Canadian medical system. After hearing about Lyme disease, she took the advice of a friend and contacted Dr. Maureen McShane – a family physician and Lyme disease survivor who lives

in Montreal and specializes in treating patients with Lyme disease, across the border in New York. Given the prevalence of the disease in Canada and that Dr. McShane has a practice of almost 2000 patients (ninety per cent of whom are Canadians seeking diagnosis and treatment for Lyme), it wasn’t surprising Tanis had to wait a few months to get an appointment. In the meantime, “I was given Dr. McShane’s ‘Lyme disease symptom list’ (see page 10) to compare against what Rian was experiencing. Rian took one look at the list and said ‘Oh my goodness, Mom, this is it; this is exactly what I’m feeling.’ ” In December 2014, on her own initiative, Tanis ordered and paid for testing from IGeneX – an immunology laboratory and research facility, specializing in Lyme disease and associated tick-borne illnesses in Palo Alto, California, so she could find out if Rian indeed had the disease. Three weeks later she received the news that Rian was positive. Although she had to wait for Dr. McShane’s analysis to understand what the ‘positive’ results entailed (which protein bands were positive), the Michelsen’s were relieved they had a diagnosis, and a starting point.

As she was waiting for Rian’s results and the appointment with McShane, Tanis was desperate to get Rian the help he needed before it was too late. “I found another physician in the U.S. – Dr. Marty Ross – who published his protocol online. He treats Lyme disease with antibiotics and herbal supplements so I convinced a friend who is a pediatrician to put Rian on doxycycline for his acne. I also followed Dr. Ross’s herbal supplement plan. It made a difference. His head cleared enough so he could hang out with his friends.” While the protocol helped Rian, he still had grave difficulty coping with everyday life. Tanis was also having difficulty coping. She had a husband, two young daughters – one of whom was so sick that year that she missed close to one hundred days of kindergarten – a new business plan in the works and was experiencing a flare up of her symptoms from her Fibromyalgia that she had struggled with on and off since her teenage years – something that was finally diagnosed in her early twenties, she says. Continued on page 8





Lyme disease Continued from page 7

Tanis says what brought her great comfort was the many other Canadians with Lyme disease, near and far who were willing to listen to her battle and offer advice and support. They too had similar experiences and struggles with obtaining diagnoses and treatment and understanding the complexities and cost of going across the border for help. In January 2015, Tanis received great news: Dr. McShane had a last minute cancellation and could see Rian the following day. Together, the Michelsen family drove seven hours to get Rian the medical help and support he needed. But that’s not where this story ends. It was only the beginning for the Michelsen family who’s endured a lifelong struggle with Lyme disease that may not be over anytime soon. A few days before travelling to Plattsburgh, Tanis connected with a mother in California whose child was diagnosed with Lyme disease. When she mentioned her Fibromyalgia was flaring up because of the stress of Rian’s illness, the mother on the other end of the phone went silent, and a few minutes later, suggested that Tanis may have been misdiagnosed so many years ago. Tanis Michelsen could have Lyme disease too. “It was like a bomb went off in my head, explains Tanis. “All of a sudden, my mind was going crazy. I was recalling the fractures each year Rian had between ages five


Borrelia burgdorferi and fourteen. I remember saying out loud: Rian has had Lyme disease his whole life and he got it from me.” The revelations about her children continued. Her youngest daughter, Lyla, 7, has been sick her whole life. Lyla was colicky as a baby, and when she was old enough to communicate, she suffered from daily stomach pain, nausea and chronic diarrhea. She also had constant ear infections – almost one every six to eight weeks from age two to age six. She had pneumonia more than once, and persistent dark circles under her eyes. And while Tanis, herself, thought she was having heart palpitations from the

stress of Rian being so sick, she realized that she too was sick – possibly sicker than anyone in her entire family. “I’ve had symptoms since I was fourteen that started with headaches and a dreamy, foggy feeling. My headaches were so bad that I sought out cranial therapy which really helped me. Up until this year, I spent a lot of time treating my ‘so called’ Fibromyalgia,” Tanis explains. According to Dr. McShane – who is caring for the entire Michelsen family (Tanis’ husband Brett and their middle child, Jade 11, also tested positive for Lyme) – studies have shown a possibility that Lyme disease can be transferred from a mother to her

children in utero and between spouses through sexual intercourse. However, the U.S. Centers for Disease Control (CDC) says there is no credible scientific evidence that Lyme disease can be spread from person-to-person through sexual contact. Attempts to demonstrate sexual transmission in infected animals have all failed, and there has not been a single, adequately documented case of sexual transmission of Lyme disease reported in the scientific literature. The sources listed on their website are dated from 1989 through to the most recent in 2001. While the Public Health authorities don’t agree that science has demonstrated sexual or in-utero transmission, doctors who specialize in Lyme disease, like Dr. McShane are seeing evidence that suggests it is possible. While the Michelsen’s case is atypical, it’s not as uncommon as one might think and is an excellent example of the struggles Canadians are experiencing trying to get answers, testing, diagnoses and treatment for Lyme disease. As concern about Lyme disease gains momentum and awareness spreads, experts want the Canadian health care profession to realize that Lyme disease is a serious threat to public health and Canada needs to improve its testing in order to help sufferers. Health professionals should have Lyme disease on their radar, even in urban areas. “It’s not all about ticks, it’s about co-infections like Babesia and Bartonella – and over twenty more strains of bacteria that exist in nature. Mosquitos are carrying Lyme as well,” warns McShane. No matter where you go in Canada, there is a possibility. And if you go to the Dominican Republic, sand fleas are carrying Bartonella.” The most common tick bites, she says, come from the larval nymphs about the size of a poppy seed. Continued on page 9




Continued from page 8

Lyme disease my myths Myth: Lyme-infected tic ticks only live in rural parts of Canada. Ca Truth: Lyme disease se is present in most of Canada.. Although Lyme infection is m more common in rural areas, re residents that live in urban areass are also at risk for infection.. It is the migratory birds, robins ns and song sparrows etc. that b bring this disease in each sea se season. ason Myth: All Lyme victims Myth deve develop a “bull’s eye” rash. Truth: Although rashes are Tr ffairly common, only 30 per cent of Lyme patients report experiencing a rash, and only nine per cent develop the classic “bull’s eye” rash. Myth: There’s no reason to treat Chronic Lyme Disease since people don’t get much better. Truth: Nothing could be farther from the truth. Most people can return to work and carry on with few limitations on their lifestyle. Lyme disease remains one of the most treatable of chronic illnesses. Myth: I was tested for Lyme disease at the provincial lab and the results were negative. I guess that means I can’t have Lyme. Truth: Actually, that’s untrue. Evidence suggests that Canada’s Lyme testing methods are flawed. False negative test results are common, especially in the early stages of Lyme. It takes time for antibodies to develop, so early tests often miss the bacteria. Contrary to bureaucratic statements, late stage Lyme disease antibody testing is much less accurate. Myth: Lyme disease testing has a ‘gold standard’ in Canada. Truth: There is no universally accepted test for Lyme disease. Every lab test has its advantages and disadvantages, but overall Lyme tests in Canada are largely flawed. Other labs recommended by CanLyme are all certified and accredited, run by PH.D’s who simply refuse to follow flawed testing protocol. Canada has no mechanism for better testing due to bureaucratic controls • Lyme is known for antigenic shifting, so antibody testing isn’t always effective. • PCR tissue and fluids tests are available for various tissue. A positive PCR is highly accurate. A negative PCR only tells the scientist that they did not find evidence in that sample. Another sample from the same patient from a different location may be positive. *Source: Canadian Lyme Disease Foundation

When they hatch they are in dark, shady, damp areas; on squirrels, rabbits, cats that are hiding and on little birds – robins are known to carry Lyme too. These creatures carry a lot of bacteria. “The underlying problem is that ticks carry many infections (probably because they feed on rodents) and some of these can be deadly. All of nature can be a problem,” says McShane. Dr. Ben Boucher, a retired general practitioner in Halifax, who practised complementary medicine for over thirty-five years and cared for over two hundred patients with Lyme disease (risking the loss of his medical license in the process) says co-infections and acknowledging that they exist is an extremely important part of the Lyme puzzle that many physicians in Canada are unwilling to accept. “There is a lot of Bartonella out here in the ticks in Halifax. And with more geese, insects travelling, an increase in temperature, environmental possibilities and climate change, we need more tick studies. We need to do more studying of insects that might be relevant to vector transmitted infections; and even before that, we need to significantly improve human testing.” In 10 months of searching for answers, Tanis Michelsen was not once offered a Lyme disease test for her son Rian. According to many experts and Lyme disease advocates, testing for Lyme disease in Canada is unreliable and inadequate. “The cold hard fact is that in Canada, serology is failing us; showing only 50 per cent positive results in early Lyme disease cases,” says Dr. Ralph Hawkins, General Internal Site Lead at Calgary’s South Health Campus Hospital and a Clinical Associate Professor of Medicine at the University of Calgary. “But, interestingly, says Hawkins, “if we take these tests and interpret them in a different way, I believe that we would be able to identify more Lyme disease cases. I think we can be a lot smarter in Canada.” Hawkins says he recognized years ago that there is a substantial gap in the care of Lyme disease patients. People are told they don’t have Lyme but are still suffering with symptoms. Testing for Lyme disease in Canada is a two-tiered approach; a screening test, either an EIA (Enzyme-linked Immuno Assay) or an ELISA (Enzyme-linked Immuno-sorbent Assay) is followed by a confirmatory Western Blot. Though the Western Blot has been shown to be both more sensitive and specific than the ELISA, if you don’t test positive on ELISA, the Western Blot is not performed. According to the International Lyme and Associated Diseases Society (ILADS), the ELISA screening test is unreliable. The test misses 35 per cent of culture-proven Lyme disease and this amounts to less than 65 per cent sensitivity, as not every Lyme patient is culture-positive. ILADS advocates that a screening test should have a sensitivity of 95 per cent or greater, and therefore the ELISA is unacceptable as the first step of a two-step screening protocol. “In Canada, all of our provincial labs have gotten together to agree on how they are going to report the test results. A positive ELISA test will be sent to the national lab and the only report we get in Canada is that it’s negative or positive, nothing else; we are just given the interpretation

of the lab according to the CDC criteria, says Hawkins.” Unlike the Canadian lab that does not report the results, the American lab will provide the results of the ELISA and the Western Blot tests and will communicate which bands are negative and positive so physicians can interpret these studies and determine if this is positive by the CDC standards. Hawkins says it’s important to note that there are bands in a Western Blot test that are “so highly specific in the Lyme disease organism, they are very, very diagnostic.” In other words, some of the bands will only be positive if you have Lyme. Jim Wilson, President of the Canadian Lyme Disease Foundation (CanLyme), also affected personally by Lyme disease, says testing in Canada “has far too many false negative results,” something that is well established in the medical literature, and acknowledged by Health Canada. “The protocol is unable to detect all the various genotypes of the Lyme bacteria, limited further because the tests are antibody tests and it takes several weeks for humans to create antibodies at detectable levels,” Wilson adds. “By then the organism will have disseminated out of the blood system making diagnosis and treatment more difficult. Late stage serology is problematic as well.” Wilson is urging Canadian health care professionals to “recognize that current tests are inadequate, and that a negative test result says very little about whether you have Lyme disease or not. Specialists who refuse to see patients with suspected

Lyme disease unless they have a positive two-tier Canadian test for Lyme disease are basically telling patients they do not care what is wrong with them. This ‘we won’t see you because you mentioned Lyme disease and you do not have a positive Canadian test’ is a denial of ethical healthcare. The science is far too clear on the failure of the current testing model for that denial of care to be allowed within our health care system. The specialists must work side-by-side with our experts to explore this rapidly growing health threat.” Both Boucher and McShane say that part of that working ‘side-by-side’ is looking at the patient as a whole and analyzing the clinical symptoms they’re presenting. “You have to be aware that if you get this [Lyme disease], it’s very hard to diagnose,” says McShane. “People think that when they have Lyme they will have bull’s-eye rash (also called “erythema migrans”). It does not need to be a target lesion. It can be a big circular rash that is expanding. It’s also important to note that less than 50 per cent of people even have the rash.” That’s why McShane’s symptom list is so long. Boucher has a similar symptom list. Both experts say that many of the symptoms – for lack of being treated – can be categorized as “chronic Lyme symptoms.” In fact, it is chronic Lyme disease and the lack of acceptance of chronic Lyme by the Infectious Diseases Society of America (IDSA) that is at the very heart of the heated Lyme controversy in Canada. Continued on page 10


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10 Focus


Lyme disease Continued from page 9

“The IDSA guideline is what Canadian physicians follow,” says Boucher. “They rely on the two-tiered testing system and they don’t want to treat clinically. Those guidelines, drove me into retirement after thirty-five years. The IDSA has denied so much that they’ve backed themselves into

a corner. They admit that if they treated more clinically instead of following these antiquated guidelines they could face liability. They also didn’t recognize co-infections.” “Doctors cannot publish articles in highly reputable journals like The New

Dr. McShane’s Lyme disease Symptom List Fill in numbers as to how you feel right now Only 1 number. FROM 0 (NO SYMPTOMS) TO 10 Symptoms (Scale 0-10) Fevers Chills / flushing sweats Fatigue/poor stamina Swollen glands Sore throat Nausea Constipation Diarrhea Chest pain Rib soreness Shortness of breath Cough Heart palpitations/skip beats Neck/back stiffness Neck cracks Neck/back pain Joint stiffness Joint swelling Joint pain Muscle pain/aching Muscle cramps Muscle twitching Headache Numbness/tingling Facial paralysis Blurry vision

Floaters Light sensitivity Ear buzzing/ringing Ear pain Sound sensitivity Poor balance Lightheadedness/woozy Tremor Confusion Difficulty in thinking Forgetfulness Poor short term memory Disorientation/getting lost Difficulty with speech Word finding problems Reversing numbers/letters Difficulty with writing Mood swings Depression Anxiety Disturbed sleep Testicular/pelvic pain Sexual dysfunction/loss libido Unexpl. Menstrual irregularity Breast pain Bladder irritability/dysfunct

Follow YFSF diet/exercise Overall % of improvement

England Journal of Medicine on chronic Lyme because they aren’t accepted,” adds McShane. The journals can’t publish anything that’s outside the standard of care. The infectious disease doctors are in a bind because the standard of care is to not treat chronic Lyme disease.” In the United States, state by state, they are passing laws to protect the doctors who are treating chronic Lyme disease, McShane notes. In Canada – there are doctors who, on their own, became aware of the fact that there is such a thing as chronic Lyme, many of whom put their medical licenses in jeopardy to prescribe “much needed” long-term antibiotics to their patients. Treatment should be based on the stage of infection. Until recently, many doctors in Canada tended to prescribe only one round of antibiotics, irrespective of the stage of infection. However, current research suggests that a single course of antibiotics is often insufficient for treating Lyme disease, especially if the infection has been untreated. Chronic Lyme disease causes continuing symptom flare-ups. For many people, symptoms can also be extremely debilitating and may get progressively worse when a patient has been infected for more than a year before seeking treatment. When a patient is diagnosed with Chronic Lyme disease, doctors work to develop an extended treatment plan. Treating Chronic Lyme can last months, years or even longer. Melanie Wills is all too familiar living with untreated symptoms – for years. Wills was a child when she broke out with an unexplained rash. A couple months later, she became unwell with fevers and fatigue. The disease even made its way into her thyroid. She recalls having to go on a reduced academic schedule and missed many months of school. “I have had Lyme disease for two decades,” says Wills, a PhD student at the University of Guelph, studying molecular and cellular biology, who also found Mc-

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Shane and only recently began treatment for her disease. “My disease has been labelled various things along that journey and doctors in Canada didn’t really know what to do with me. I was told I had Chronic Fatigue Syndrome and Fibromyalgia. I couldn’t tell you the number of specialists I saw over the years. Every part of my body has had its own doctor.” Joanna Johnston, an Occupational Therapist from Toronto, feels Wills’ pain. Although her journey to diagnosis and treatment was not as long, she experienced similar frustration trying to get answers for her unexplained and prolonged symptoms over a three-year period. “In 2009, I was bitten while vacationing in the Thousand Islands. I broke out in a rash and my family doctor actually suspected Lyme disease. He prescribed one week of antibiotics and did the Lyme test, telling me I would be “covered” either way.” Johnston tested negative for Lyme and continued to experience symptoms which included intense fatigue and severe gastrointestinal issues. Then, in 2011 while at a cottage in Georgian Bay, she was bitten again. The bite was on her finger but she didn’t develop a rash. Her finger remained stiff and swollen for a few days but then went away. However, her symptoms intensified. She experienced problems with her vision, suffered from nausea, facial pain, chills, headaches, extensive irritability and increasing pain and stiffness in her neck. She was off work for almost four months. “When I returned to my family doctor, he diagnosed me with Fibromyalgia and recommended I think about taking medication for my “anxiety” and other mental health issues I may be experiencing. He also recommend a support group so I could talk to other people about my “anxiety.” It was really frustrating. I am so thankful that I heard about Dr. McShane when I did. Seeking diagnosis and treatment from her has changed my life and I am feeling much better.” “I feel sorry for these doctors in Canada,” says McShane. “People are coming to them and are desperate but they can’t do anything. They are stuck in this position and can’t do anything to help these people. But it’s not their fault.” McShane adds that when a person begins developing chronic symptoms, they are put into a category; they are depressed, have too much stress in their life etc…They end up with “many diagnoses – Chronic Fatigue Syndrome, Fibromyalgia to name a few – and as the symptoms progress they get sent around to different specialists. Many of these chronic infections are associated with bacteria but underlying the diagnoses are infections.” And just like Tanis Michelsen, who realized her Fibromyalgia wasn’t really Fibromyalgia, McShane says because of chronic Lyme disease, people are starting to realize that diseases like Multiple Sclerosis (MS), ALS and Chronic Fatigue Syndrome – to name a few – need a hard re-examination and people who suffer from these ailments should be tested for Lyme disease. “You may have other things. MS is more of an autoimmune disease due to underlying bacterial infections. When you start looking at it that way, a twenty-seven thousand dollar a year medicine for MS isn’t really needed,” she says. Continued on page 11


Focus Focu us 1 11

Continued from page 10 McShane says that many people aren’t aware that “Lyme is one of the smartest bacteria ever born.” Spirochaete bacteria (Lyme) operate differently, she says. They are flagellated and move. They are corkscrew-shaped and have the ability to coil themselves up and lay down a surface protein and then hide in tissues. They are not recognized in your body as foreign. And they are even known to be resistant to antibiotics, that’s why Lyme literate medical doctors (LLMDs) promote an antibiotic regime for longer than the Canadian standards of care permit – over 21 days. The Lyme disease dilemma in Canada is a complicated debate that seems to be garnering consistent attention, even outside of the spring and summer months. But what research is being done to decipher the Canadian Lyme landscape and what are the most important points for Canadian health care professionals to know right now? Dr. Vett Lloyd, a Professor of Biology at Mount Allison University in New Brunswick has spent the last four years doing extensive research on ticks and Lyme disease, mostly in New Brunswick, after she herself acquired Lyme disease. Lloyd says that New Brunswick is an area in which ticks are becoming established so it gives researchers an excellent opportunity to study how this happens on a local level, which can complement the national tick surveillance programme. “We’ve also been looking at Lyme disease in dogs,” adds Lloyd. “Dogs have been used as a sentinel species for Lyme disease because they live in the same communities as people. So if a dog gets Lyme disease that means that the people in the same household, for example family members who walk the dog, are at risk of contracting Lyme disease. We found that dogs throughout the province had contracted Lyme disease, showing that the risk is everywhere. The rate of Lyme disease in dogs has increased drastically, more than six fold, since it was last monitored seven years ago, which has serious implications for human health.” Lloyd says dogs are at higher risk of getting ticks on them than people because dogs are hairier, shorter and in most cases are more likely than people to be running through long grass and forest. This means that veterinarians see a lot of ticks on their patients. In the veterinary community, an in-clinic test (that takes 10 minutes) is often used to detect Lyme disease. This means that when a dog is sick, the veterinarian and the client can get the test information very quickly and decide on the spot about how best to treat the dog’s symptoms. “This is the same general type of test used in human medicine but unlike human medicine a positive result on this ELISA test is considered sufficient evidence to treat the dog, no second tier testing is required. Veterinarians are also often quite open to treating based on clinical symptoms,” says Lloyd. When it comes to people, Lyme disease seems to be more multilayered and a lot more complex. Nevertheless, Lloyd concludes that her research is proving what she already knew: “Lyme disease is a rapidly emerging and serious problem for all regions of Canada,” says Lloyd. “To solve the problems associated with preventing as many new cases as possible,

There were 682 confirmed tests in 2013 Canada-wide, and in testimony to the federal government in 2014 senior executives of the Public Health Agency o of Canada admitted that those numbers were likely under-reported three-fold, and, th they said that in 4.5 years from now those numbers will increase to between en 10,000 a and 20,000 cases per year. On August 19th, 2013 the US government announced nced th they had been under-reporting their annual cases. Instead of 30,000 cases per year, a the number is closer to 300,000 annual cases. Source: Jim Wilson, CanLyme ( diagnosing those who have already contracted the disease, and then effectively treating those with the infection, be it recent infections or long standing infections, we need the medical community, the biomedical research community, the veterinary community and the patient groups all working together. This sort of concerted and cooperative approach has resulted in tremendous progress in dealing with other diseases such as HIV/AIDS, breast cancer, prostate cancer etc.” Jim Wilson is also advocating for people to work together to achieve goals when it comes to fighting this rapidly emerging phenomenon. “We have no infrastructure to deal with [Lyme disease]. Education of medical professionals is limited, and reflects very controlled messaging from those responsible for disseminating educational material for the past decades. Patients, and their experts must be involved in the medical educational material output.” “In fact, there’s a lot more Canada needs to do and important information that health care professionals in Canada should be aware of,” adds McShane. Years ago, doctors learned about medicine by studying syphilis and how it affected the heart, brain (to name a few systems). In medical school, adds McShane, they need to look at resident bacteria. She warns that medical professionals shouldn’t always trust what’s in their journals; that there is more to the story about chronic Lyme disease than what doctors are getting from their journals. “There is most certainly a way to treat for chronic Lyme disease and other neurological disorders,” McShane adds. “And once doctors learn how to do it is not difficult to follow patients.” McShane says she is the “last stop” for many Canadian patients – many of whom have seen at least three specialists by the time they come to see her. She had one man who had seen twelve neurologists and had over five MRIs before he found McShane. “In Canada, the cost of these patients is astronomical,” adds McShane. “And the best example I have of that is my own experience. When I got sick, I got a great response. I went to many Canadian hospitals and clinics. I didn’t get a diagnosis of Lyme disease and overall, I must have cost the Canadian health care system approximately thirty thousand dollars,” she explains. “People wanted to help me but the problem was they weren’t looking for Lyme. There’s a controversy because of Lyme disease and the standard of care that’s allowed in Canada – my symptoms didn’t fit the guidelines that were out there about Lyme. I was told, I was probably just in early menopause. This is what happens to people all the time.”

While Canada waits for the implementation of leading Lyme disease innovation and research; revised infectious disease guidelines and the fearless leadership in the Green Party of Canada’s Elizabeth May – as she continues to fight for a better framework for Lyme disease in Canada through Bill C-442 – McShane says she advises Canadians suffering with Lyme disease to “follow your heart.” “Know that you don’t trust anybody, you go along with what you feel and you just keep going. Trust yourself. Know that even if you’re living in a city doesn’t mean that you can’t get a tick bite.” Tanis Michelsen is following her heart every day. With all five members of her family, including herself, on various medications for chronic Lyme disease, every day presents a new challenge. Every day is an opportunity to learn something new about her family. Her daughter, Lyla, had food sensitivity testing a couple of years ago and tested positive to fifty foods. Now that she’s being treated for Lyme disease, almost all of those food sensitivities have disappeared, along with the constant stomach pain, nausea and diarrhea. “Dr. McShane explains that Lyme literate doctors and paediatricans believe Lyme bacteria gets into the stomach lining of the little ones and causes all of those issues. It’s amazing how it has manifest-

ed differently in every one of my kids,” says Tanis. Despite the tremendous ordeal the Michelsen family has faced, and continues to battle, Tanis says there’s a ‘one-of-a-kind’ gift that’s comes from this terrible situation. “We all know how to deal with each other’s challenges and we are going through it together. Yes, it’s extremely unfair that all five of us are ill, and it’s also frustrating that doctors don’t understand bacteria. But I take so much comfort in knowing that the five of us know how each other feels and we support each other – each other is all we have.” As for Rian Michelsen, he’s back at school and poised on centre stage, pursuing his acting dream every chance he gets, with more determination than ever. “The silver lining for Rian is that he now has his own barometer,” says Tanis. “His strength and persistence after what he’s experienced will no doubt provide him with more depth as a performer. I am H so excited for his future.” ■ Sarah Quadri Magnotta is a Hospital News Advisory Board Member and a Toronto-based freelance journalist and writer. Sarah is currently completing a Master of Science in Strategic Communications Degree at Columbia University in the City of New York.


12 Safe Medication

Drug shortage and patient safety By Marvin, Ng, Jim Kong, and Certina Ho


rug shortage has been an ongoing issue and has been described in various literature as a challenge common to both hospital and retail pharmacy settings today. For the purpose of this article, “drug shortage” is defined as any shortage of a prescription medication in a pharmacy’s inventory. The causes of drug shortages are rarely due to any one singular outstanding factor, but rather a combination of several causes. Drug shortage issues can be broadly interpreted from a supply and demand perspective. Drug supply issues can include, the drug not being available due to manufacturing problems, availability of raw ingredients, safety concerns, and discontinuation of products, etc. Contrarily, the demand for drugs may shift drastically due to poor pharmacy inventory management, disease outbreaks, or a shift in prescribing practice, etc. The consequences of drug shortages often lead to negative effects in the patient care continuum across various settings. The most common consequences include: • Delay in treatment • Discontinuation of treatment • Receiving a less effective drug or formulation • Extra time required to locate alternative drug by pharmacy staff • Increased cost of alternative drug to the pharmacy department Patient safety-related issues in the acute care setting have been described in several


reports. However, these issues may not apply to the community pharmacy setting; and hence, the impetus for this multi-incident analysis. Medication incidents associated with drug shortages were collected from the Community Pharmacy Incident Reporting (CPhIR) Program and analyzed by medication safety analysts from ISMP Canada. Two major themes were identified from this analysis, which were further subdivided into subthemes as seen in Table 1. Table 1 Themes and Subthemes Derived from Analysis of Incidents Related to Drug Shortage Theme Subtheme Deviation from the • Risk of overdose Intent of the Original • Risk of under-dose • Incorrect drug Prescription • Patient confusion and misunderstanding Near Misses

• Association error • Incorrect brand selected • Incorrect strength • Patient confusion and misunderstanding

Deviation from the Intent of the Original Prescription – Modifying a prescription due to drug shortages is a common practice, but is often a multi-step process utilizing relatively complex calculations to attain an equivalent efficacious dose. All staff members should apply independent double checks to the order entry and dispensing processes in order to ensure patient safety.

Near Misses – These are medication incidents that could have caused harm to the patient, but were prevented or intercepted in time by the pharmacist, the pharmacy staff, or the patient. Most of these reported incidents stated that the patient often misunderstood the changes to their medication due to drug shortage. If left unresolved, these incidents could potentially lead to negative outcomes such as non-compliance and/or incorrect use of the medication. ISMP Canada recommends the following to mitigate drug-shortage associated medication incidents: 1. Independent double checks should be implemented in the pharmacy workflow. Having a dialogue with the patient when the medication is being picked up may also serve as an independent double check to ensure that the right medication is being dispensed to the right patient. 2. Thoroughly counsel the patient on the identity of the altered medication, the appropriate directions for use, etc. will help to avoid any misunderstandings and inappropriate use of the medication. 3. Follow-up or monitoring is important in dealing with issues of drug shortages, especially in cases where an alternate brand of the medication has been dispensed. Some patients may be sensitive to brand changes and respond differently (better or worse) compared to the previous brand they were taking for their condition. The incidents gathered from this multiincident analysis have reinforced the nega-

Examples of Canadian Resources for Handling Drug Shortages The following is a list of Canadian resources that may be helpful for pharmacies with respect to handling drug shortages. Canadian Drug Shortage Database • Drug Shortages: A Guide for Assessment and Patient Management (Canadian Pharmacists Association (CPhA), 2010) • Drug Shortages (Canadian Society of Hospital Pharmacists (CSHP) • Drug Shortages (University of Saskatchewan medSask) • Drug Shortages and Medication Safety Concerns (ISMP Canada) • tive impacts that drug shortages can have on patient safety. Drug shortages continue to be an inevitable issue that many pharmacists, patients, and health care providers must face on a regular basis, but actions can be taken to prevent the likelihood of H negative outcomes. ■ Marvin Ng and Jim Kong are PharmD Candidates at the School of Pharmacy, University of Waterloo; Certina Ho is a Project Lead at the Institute for Safe Medication Practices Canada.

From the CEO's Desk 13

Helping kids reach their fullest potential By Julia Hanigsberg

olland Bloorview Kids Rehabilitation Hospital is a leader in childhood disability and rehabilitation. Kids come to Holland Bloorview from different paths. Some of our clients will have been typically developing until they experienced a brain injury or other acquired condition. Others will come to us as inpatients recovering from complex surgery. Many of our clients will have been diagnosed with a disability early on in life, some shortly after birth. Our vision is to help all the kids and youth we serve reach their fullest potential by creating a world of possibilities. This isn’t just about providing quality care, although that is always job one for the close to 600 inpatients and 7,000 outpatients we serve each year. It is also about ensuring we provide tools and opportunities for kids with disabilities to participate fully in life and become advocates for their futures. When I think of an advocate, I think of Jillian, a spirited six year old who receives care from Holland Bloorview physicians and therapists for her cerebral palsy and is a recent graduate of the integrated kindergarten program at the onsite Bloorview School. I met Jillian during my first week as president and CEO back in January 2015 and was immediately struck by how she wasn’t afraid to speak her mind and express her opinions and ideas.


Our vision is to help all the kids and youth we serve reach their fullest potential by creating a world of possibilities.

President and CEO Julia Hanigsberg and Jillian, a client of Holland Bloorview Kids Rehabilitation Hospital. reduce social isolation – something many kids and youth with disabilities face. Through participation and inclusion programs, kids and youth can develop to their greatest potential for independence, a rich life and satisfying future. When youth engage in programs that help them learn calculated risk-taking and life skills, they can move through life more confidently and independently. When we provide opportunities for youth to gain work experience, like through our Youth@Work program, we not only help them them build critical employment skills, but also help

Photo credit: William Suarez/Holland Bloorview Kids Rehabilitation Hospital.

break down negative stereotypes about people with disabilities in the workforce. An important part of creating a world of possibilities for kids and youth with disabilities is advocating beyond our walls. As a leader in childhood disability, this means that we have a role in changing hearts and minds and helping to amplify the voices of the clients and families we serve. It means helping to shift our collective thinking about what is “normal” and bringing awareness to the limits our society imposes on kids and youth with disabilities and the adults they become.

When kids and youth with disabilities and their families have tools and opportunities to partner fully in their care, participate fully in their life and advocate for their future, they have infinite possibilities to maximize their own unique potential. Julia Hanigsberg is President and CEO of Holland Bloorview Kids Rehabilitation Hospital. Read Julia’s blog at https:// and connect with her through Twitter @ hanigsberg and the hospital @HBKidsHospital.

I wasn’t surprised when I learned she and her older sister Lauren are among the founding members of the hospital’s Children’s Advisory Council. The council, similar to our youth and family councils, is a formal program for our young clients (and their siblings) to help shape and improve the services and research that directly impact their care and their futures. The council provides opportunities for members like Jillian and Lauren to hone their advocacy and leadership skills, which will help them throughout their lives as they navigate the health care system and a society that isn’t always inclusive. Helping kids reach their fullest potential also means developing technologies to help them overcome barriers they face every day. Technologies like the Hummer device. Developed by Dr. Tom Chau, our VP of Research and Director of the Bloorview Research Institute, and his team, the technology enables a person without the ability to speak to transform the vibrations of his or her vocal cords into text on a computer screen. It can also be used to control wheelchairs or computers, making it easier for kids with disabilities to get around and communicate their needs and wants. Imagine how this type of technology might


14 Evidence Matters

Don’t let new health technologies catch you off guard By Barbara Greenwood Dufour ith an ever increasing number of medical technologies being developed every year, this is truly an exciting era of medical innovation. But, it can be difficult to keep on top of all the new developments. We learn about new and emerging health care innovations from journals and conferences. We may even be caught off guard hearing about the “latest and greatest” technology from colleagues – or from patients. CADTH’s new Horizon Scan Roundup alerts you to the emerging technologies you could be making decisions about in the


near future. CADTH – an independent, evidence-based health technology agency – is continually scanning the horizon for emerging drugs, medical devices, and procedures likely to have a significant impact on patient care and the health care system. The focus of Horizon Scan Roundup is on medical devices, procedures, and diagnostic tests. It provides brief descriptions of new technologies and links to horizon scanning reports that have been published in the previous year by major international horizon scanning services and selected health organizations recognized for their identification of innovative technolo-

gies. These organizations include AHRQ (Agency for Healthcare Research and Quality), CNESH (Canadian Network for Environmental Scanning in Health), ECRI Institute, NICE (National Institute for Health and Clinical Excellence), NIHR (National Institute for Health Research), CADTH, and several others. The first edition of Horizon Scan Roundup is now available, free of charge, on the CADTH website at horizon-scan-roundup. It lists and summarizes 130 titles that were published in 2014, organized by 19 topic areas, and it includes links to the full text of the published re-


YOUR ADVANTAGE, in and out of the courtroom.

ports. Technologies for a wide range of medical purposes are described, including new tools for detecting and monitoring diabetes, diagnosing stroke and brain injury, and screening for eye conditions in children; less invasive surgical options for treating mitral regurgitation and for inserting tubes to treat children with middle ear infections; video games for mental health issues in young people; a patch that transmits the wearer’s vital signs to a webenabled device; and robots that deliver telemedicine. CADTH plans to publish a new edition of Horizon Scan Roundup each year. Horizon Scan Roundup is produced by CADTH’s own Horizon Scanning program, which publishes bulletins on what is currently known about new and emerging health care technologies that could impact the Canadian health care system. One component of CADTH’s Horizon Scanning process is to systematically monitor what other international horizon scanning agencies and services have been tracking and evaluating for their own jurisdictions. Horizon Scan Roundup is developed from the information generated through this monitoring activity.

CADTH’s new Horizon Scan Roundup alerts you to the emerging technologies you could be making decisions about in the near future.

CADTH Horizon Scanning bulletins, which are produced and posted on the CADTH website regularly throughout the year, are another resource you can use to stay informed of new and emerging health technologies. These peer-reviewed bulletins contain all the evidence-based information available on a variety of medical technologies, including prescription drugs, not yet available or widely used in Canada at the time of publication. They provide a complete picture – a description of the technology, patient indications, the regulatory status, adverse effects, costs, the extent of diffusion, and implementation issues, all within a Canadian context. You can access the CADTH Horizon Scanning bulletins, at no charge, at environmental-scanning. Learning about new and emerging health technologies in advance helps you with planning and prioritizing, gives you an idea of what we know about the technology – and what we don’t, and helps you better understand the appropriate place of the new technologies with respect to existing ones, as well as how quickly they might become widely used. To learn more about CADTH, visit, follow us on Twitter: @ CADTH_ACMTS, or talk to our Liaison Officer in your region: tact-us/liaison-officers. ■ Barbara Greenwood Dufour is a Knowledge Mobilization Officer at CADTH.


The Canadian Association of Paediatric Health Centres Making a difference in the lives of Canada’s children, youth and families SPECIAL PULL OUT SECTION



Together we are making a difference! By Elaine Orrbine any believe that children and youth are a robust and healthy population and therefore not a driver of health care costs. However the facts tell a very different story. Canada’s children are, for the first time in generations, less healthy than their parents and have a shorter life expectancy than previous generations. This is due to a number of interacting factors partially assigned to significant increases in rates of overweight and obesity, decreasing levels of physical activity and the impact of the environment. While the decreased levels of health are devastating to children and their families, this fact also has the potential for significant impact on our health care system and costs (Table 1). We must begin to create innovative integrated national systems and models of care, policies and practices to reverse the downward trend in child and youth health. The Canadian Association of Paediatric Health Centres (CAPHC) is a recognized leader and advocate for advancing the improvement of healthcare for Canada’s children and youth. CAPHC’s mandate is to affect system-wide change in the delivery of health services. CAPHC focuses on innovative initiatives and programs that have broad national relevance and which are practical and actionable. CAPHC has demonstrated that advances and improvements in child and youth healthcare, at a system level, are possible through collaboration, partnerships and innovation. CAPHC was established in 1968 as the Canadian Association of Paediatric Hospitals; at that time, representing the majority of children’s hospitals in Canada. In 2001, CAPHC expanded its national outreach to include all children’s hospitals in the country, many community health care centres, regional and provincial health authorities, rehabilitation centres and home care provider agencies (i.e. the continuum of care). Today, CAPHC is proud to partner with more than 70 organizations in Canada that provide essential health care services to our children and youth. Each year, approximately 8.75 million children and youth rely on the services of CAPHC’s member organizations. In October 2014, CAPHC implemented its new five year strategic plan, to address critical gaps and shared challenges of the child and youth health care community in Canada. By “Being the Voice, Taking the Stage, Making a Difference and Being Here for Tomorrow”, CAPHC is committed to enabling the best healthcare for Canada’s children and youth and to enhancing the application of knowledge from research to practice to health policy. CAPHC’s mission is to support our member and partner organizations through education, research, and quality improvement initiatives to improve health service delivery for Canadian children and youth.

Indicators of Canadian child and youth health utilization and standards


Innovative collaboration and partnerships:

CAPHC has demonstrated its ability to develop and maintain strong national partnerships and collaborations at every level of paediatric healthcare and has developed and implemented system-wide programs and initiatives that have no provincial or territorial boundaries. HOSPITAL NEWS AUGUST 2015

Child & Youth Health Care Utilization1

Every year 600,000 children and youth visit our emergency departments

500,000 seek help for a disability

Rank in Comparison to Other Developed Countries2 (of 29 countries)

Overall Rank: 17th

Overweight: 27th

350,000 are admitted to paediatric and community hospitals

Immunization Rates: 28th

200,000 are treated for the serious side effects of paediatric illness such as asthma, diabetes and cancer

Cannabis Use: 29th

Spend approximately 1,500,000 days per year in hospital away from their homes and families.

Child & Youth Health Care Costs

Obesity & complications3: $35.5 Billion

Increasing Rates of Preterm Birth4: $27.8 Billion

Mental Health Treatment5: $423 Billion

TOTAL: $486 Billion over 10 years

Health & Safety: 27th

UNICEF Innocenti Report Card 11 Child Well Being in Rich Countries 2Ref: CIHI DAD and NACRS, 2008–2009 Report from CIHI and Public Health Agency of Canada. 4NIH 5 Mental Health Commission of Canada 1 3

Over the past decade CAPHC has established key strategic partnerships with national organizations including Accreditation Canada, the Canadian Institute of Health Information (CIHI), the Institute of Human Development, Child and Youth Health of the Canadian Institutes of Health Research (CIHR-IHDCYH), and the Canadian Patient Safety Institute (CPSI). These partnerships have enabled innovative unprecedented programs that have positive impacts on the delivery of care for children and youth at a system-wide level. In partnership with CIHI, CAPHC has developed and implemented an innovative national paediatric benchmarking program engaging all children’s hospitals and several community health care centres across Canada. This initiative has resulted in seamless access to specific paediatric data from each of the participating centres, thereby allowing the creation of a national paediatric benchmarking program focused on identifying best practice to improve health outcomes. Our partnership and collaboration with CIHI has also resulted in the development of an unprecedented national paediatric rehabilitation reporting system that is scheduled to be launched in September 2015. In partnership with Accreditation Canada, CAPHC has developed national standards of care for the paediatric population in the areas of: patient safety; the administration of high-risk medications to children; and national standards of care for children presenting to community hospital emergency departments.

Our current work with Accreditation Canada is focused on the development of national standards for inter-facility transportation of critically ill maternal, neonatal and paediatric patients. These initiatives are examples of how national collaboration and partnerships can foster innovative solutions to improve health care outcomes and reduced costs. In addition, CAPHC has developed essential partnerships with many Children’s Hospital Foundations, Federal Agencies and Corporate Partners which has enabled the creation and implementation of a vibrant and highly interactive knowledge translation platform as well as several national initiatives focused on priority areas of child and youth healthcare.

Innovation and enhanced coordination:

Navigating, understanding, and ensuring the best appropriate care in our current complex and fragmented health care system is often a discouraging and daunting task. For parents of children and youth with complex care needs, transition from paediatric to adult care facilities and community services are times of risk and stress. It is often at these transitional times in a child’s care that coordination breaks down and critical gaps in services appear. Innovation and better coordination is required to help our children and their families navigate the health care system. Despite the best intentions of health care providers, administrators and policy makers, Canada’s system continues to be fragmented,

lacking national standards, consistent policies and procedures. National strategies are needed to harmonize paediatric best practice and models of care.

Together we can make a difference!

As a nation, we must ensure a strong, sustainable and cost effective health care system for our children and youth. Health care organizations across the country have and continue to develop innovative models of care specific to children and youth, however adoption of these models of care at a national level is often lacking. Through well-established collaborations and the opportunity to develop new partnerships, CAPHC believes that we can play a strategic role in the development and implementation of an integrated and improved health care system(s) to achieve this objective. This 1st Annual Paediatric Supplement in association with the Canadian Association of Paediatric Health Centres will highlight many innovative and effective models of care that have been developed, implemented and evaluated by many child and youth health care organizations from across the country. Together we are making a difference to ensure better health outcomes and a healthier future for CanaH da’s children, youth and families! ■ Elaine Orrbine, President and CEO, Canadian Association of Paediatric Health Centres (CAPHC).



Unique program to

get kids fit By Ania Basiukiewicz

ne in three students in Peel Region is overweight or obese, which often leads to complications in their physical, social and emotional well-being. Peel Region is also home to some of the youngest residents in the Greater Toronto Area – 6.1 per cent of children aged zero to four years as well as, at 19.7 per cent, the highest proportion of people aged 14 years and under – more than 254,000, as shown in the latest census report. According to the Childhood Obesity Foundation, without help and support, most adolescents struggling to manage their weight do not overcome this problem. Many will continue to gain excess weight, leading to obesity and potential serious health complications in adulthood. To help address this growing concern in their community, Trillium Health Partners is launching an innovative program to help ensure some of their youngest patients get, and stay, healthy and fit. KidFit is a prevention and treatment program teaching children and youth from the ages of two to 17 to live healthier lifestyles through nutrition and behavioural counselling, supported by exercise classes and parenting skills classes for parents and caregivers. Working in partnership with Trillium Health Partners’ Paediatric


Diabetes Outpatient Clinic, the KidFit program includes diabetes screening, prevention and education, with a goal to improve weight management and break the cycle of childhood obesity, type 2 diabetes, depression and anxiety. Using a holistic, interprofessional team approach, KidFit customizes treatment plans to best suit young patients and families. KidFit will be the only program in the region that pairs individual counselling sessions with a variety of group classes offered outside of the hospital environment, in the community where children and families live – an approach not traditionally offered as part of a hospital weight management program. Moreover, to help busy families make the most of the program, treatment sessions will also be available after-hours. Paediatric endocrinologist Dr. Ian Zenlea has joined Trillium Health Partners from Harvard to lead the KidFit program. “A growing number of children in our communities struggle with obesity. Some also struggle, often silently, with issues such as anxiety, depression, and bullying at school. These can have a very real effect on their lifestyle, and that in turn affects overall physical health, with weight being just one component. So our approach looks at the many dimensions contributing to a child’s weight problem, and meeting them exactly where they are at in their individual journey,� says Dr. Zenlea.

Part of Trillium Health Partners’ Interprofessional KidFit Team. Supported by the Medavie Health Foundation and Ontario’s Ministry of Health and Long-Term Care, KidFit’s unique multi-disciplinary approach includes a dedicated team made up of a paediatrician, dietitian, social worker, exercise specialist, child psychologist, nurse and program manager. KidFit also leverages Trillium Health Partners’ broad range of community partnerships to ensure multiple health care providers work together with children and families to guide their care, empowering them to live healthier lifestyles. “Patient experience has been a top priority in building the KidFit program, and by listening to our young patients and their families, we have the unique opportunity to incorporate the patient voice into our program design right from the start,� says Alex Wills, Project Manager, Trillium Health Partners’ KidFit program. “This will really help us develop an authentic patient-centred care approach that resonates with patients, and works for them.�

Mississauga is one of the most diverse communities in Ontario, and the KidFit program is designed to take social, cultural and religious diversity into account to best support the residents it serves. “We’re looking at incorporating hands-on activities like cooking classes that can help children and families be more successful at using healthy recipes as a more regular part of their lifestyle and diet plan,� says social worker Erin Lipsitt. “We really want children and families to be in a comfortable environment where they feel relaxed, and more receptive to some of the teaching and therapy.� Trillium Health Partners is committed to creating a new kind of health care for a healthier community, and supporting children and youth in our community to be as healthy as they can be is a big part of that. KidFit expects to start accepting its first H patients in late summer 2015. ■Ania Basiukiewicz is a Communications Advisor at Trillium Health Partners.

Contributing to advancements in care for Canada’s children and youth Since 2006, Medbuy has been pleased to support the work of the Canadian Association of Pediatric Health Centres (CAPHC). We are proud to have enabled CAPHC to develop and implement multiple National Patient Safety and Quality Improvement programs, which have resulted in national standards for medication reconciliation practices and the delivery of high alert opioids. More recently, we were proud to support CAPHC’s national project aimed at improving the quality and safety of care when using nitric oxide for the treatment of life threatening pulmonary hypertension at neonatal and pediatric critical care facilities. The goal of this work is to establish national standards and guidelines for the delivery, utilization and weaning of inhaled nitric oxide for neonatal and pediatric patients. Nitric oxide LVDGLI¿FXOWGUXJWRGRVHVDIHO\DQGUHSUHVHQWVD VLJQL¿FDQWRSHUDWLRQDODQG¿QDQFLDOLPSDFWIRU hospitals. Developing national standards will positively impact patient safety for this highly specialized population, while contributing to operational HI¿FLHQF\IRUKRVSLWDOVDFURVV&DQDGD

As long-time supporters of CAPHC, we are proud to be enabling the best healthcare for Canada’s children and youth. 7R ¿QG RXW PRUH DERXW 0HGEX\ FDOO  [  RU YLVLW XVDWZZZPHGEX\FD.

CAPHC is a great example of how all of us in the healthcare system can work together to improve system performance. Through knowledge sharing and collaboration, we can develop innovative approaches to providing improved care for our children, youth, and their families.

Medbuy is proud to have supported this ongoing national conversation about ways in which we can better serve the patient. 7RÂżQGRXWPRUHDERXW0HGEX\ÂśVXQLTXHFRQWUDFWLQJ strategies for neonatal and pediatric populations, contact Brenda Lambert, Director, Clinical Services: AUGUST 2015 HOSPITAL NEWS



Mom Courtney Cockburn, baby Alisa Van Oosterwijk and McMaster Children’s Hospital occupational therapist Aune Hjartarson, taken in the Level 2 NICU.

Photo credit: Scott Levely

McMaster Children’s Hospital takes its cues from pre-term infants By Agnes Bongers


lisa Van Oosterwijk may only be four weeks old, but she knows how to talk. Her language is in physical and behavioural cues – her quiet alert state, rooting with her tongue, and bringing her hands to her mouth. She’s telling her mother Courtney Cockburn that she’s ready to eat. But how does Courtney, a first-time mom know that? Recognizing the cues for feeding readiness among premature babies is one of the key lessons imparted by the staff in the Neonatal Intensive Care Unit at McMaster Children’s Hospital. They work with new parents to help them look for and recognize signs of feeding readiness in their preterm infant. Infants communicate signs of stress and stability through their behaviour, breathing, movements, and wakefulness. Occupational therapist Aune Hjartarson explains that when parents are empowered to understand and respond to those cues, they are better able to adjust and respond to their infant’s needs during feeding. It’s part of a new model of care implemented a year ago called Cue-Based Feeding. The philosophy of care, according to Hjartarson, is that the amount of breast milk or formula a baby eats is important, but the quality of the feeding is more important. A successful feeding is not just measured in millilitres, it is a safe, enjoyable, and developmentally appropriate experience for that infant. HOSPITAL NEWS AUGUST 2015

Cue-based feeding has been implemented in other hospitals across North America, but is fairly new in neonatal units in Canada. In a world where gestational age is counted in days, heartbeats in seconds and weight in grams, it is no surprise that feeding preterm infants in the NICU has traditionally been guided by the time on the clock and the number of millilitres consumed. It’s all about measurable quantities to ensure survival. Cue-based feeding turns that notion on its head by saying it’s the quality of feeding that matters most, and the person who decides that quality is the baby. “I often see parents feeding their baby and looking at the monitors to make sure nothing is wrong,” says Hjartarson. “But with cue-based feeding we are teaching them to look at their infant. The infant’s behaviour, colour, breathing, and state are the most important signs of feeding quality. Parents are empowered to know their infant.” Hjartarson gives the example of a simple raised eyebrow from the baby during feeding – a sign that the baby is having difficulty breathing, and may need a break. Recognizing that tiny cue means that parents can respond with pacing to help their infant feed well. While monitors hooked up to the baby would have shown there was a breathing problem after it’s happened, recognizing that cue means that parents and staff can prevent the problem from happening. It is about being proactive.

Hjartarson says that the complexity of learning how to eat is often underestimated in an acute care medical environment. But the transition from tube feeding to breast and bottle feeding for a preterm infant is a critical developmental milestone and a big step in the journey toward discharge home. Hjartarson explains that the effort a premature baby takes to feed through those initial weeks is significant. In fact, she explains that it takes 26 muscles and six cranial nerves to trigger the swallow that takes only one second. Add to this the very demanding environment of a neonatal intensive care unit, with its machines and activity. All of this means work for baby – and training for parents to understand it. Hjartarson says that parents have reacted well to cue-based feeding and find comfort in knowing that they are responding to their baby’s needs in the moment. The move to adopt cue-based feeding at McMaster Children’s Hospital was done methodically, involving a great deal of training for staff. Education was unit-wide and included creating videos of infants before and during feedings to help staff recognize infant cues. Various learning sessions and workshops continue to be offered to sustain practice change and a focus on quality over quantity. Recognizing that good nutrition is critical for growing preterm infants, they continue to receive tube feeding as they learn to eat on their own. Learning to eat is a gradual process as infants gain endurance

and communicate their needs through those feeding cues. Hjartarson says hospitals that have used cue-based feeding have realized shorter stays in the neonatal unit, and can reach full oral feeding faster. At McMaster Children’s Hospital with the largest neonatal unit in Ontario, where about 1,200 preemies are cared for in the 46-bed Level 3 unit and 14-bed Level 2 unit, results such as that have not yet been measured, but they are looking at methods of measuring success in the future. To ensure the program is sustained, the Infant Driven Feeding Scales (Ludwig & Waitzman) are used to assess the baby’s feeding cues, using three scales to help decide when the infant is ready to eat, how well the infant eats, and the strategies that help the infant eat well. While quality is the goal, these scales help move the process out of subjective to objective decisions based on each infant’s needs. The scales are laminated and posted at each infant’s bedside to include everyone in the process. Hjartarson is confident the program is having a positive impact on infants and their families. For parents like Courtney, cue-based feeding provides a sense of confidence that her baby Alisa is getting what she needs to grow and thrive in a healthy way to get the H best start possible. ■ Agnes Bongers is Manager, Media Relations & Digital Strategy at Hamilton Health Sciences.



A leap forward in Care: A turning point for child and adolescent mental health By Amy Totten


esponding to the mental health and addictions needs of youth is a highly specialized field that requires some innovative approaches in care. It was this thinking that guided the development of the state-ofthe-art Garron Centre at the IWK Health Centre in Halifax, NS. Since the IWK opened the Garron Centre for Child and Adolescent Mental Health last year, there has been marked outcomes in the quality of care that is provided to children and youth with severe mental illness, and their families. Created with input from youth and the families who had used the former unit, the Garron Centre resembles modern university residences. The patient rooms are casual and inviting with abundant natural light and decorated in bright blues and greens. There are also common areas that are welcoming for patients, their families and staff. “The Garron Centre has given our patients and families a space that truly matches the exceptional care they receive from our dedicated and deeply passionate staff and physicians. It’s been an outstanding year for everyone and we are truly grateful to the donors, patients, families, staff and care teams that made this unit a possibility,” says Kristi Kempton, Manager, Garron Centre, IWK.

Not only is the Garron Centre built to be patient and family-centred, but it was also designed for function. Nursing stations are straddled by two corridors and the radial design of the floor plan allows a direct line of sight to all rooms when staff are at their stations. That simple design change translates into the addition of hundreds of hours a year that nurses are now available to spend with patients, as well as increased patient safety. The past year and the new centre highlight many successes, but perhaps more than anything it symbolizes the value the IWK places on mental health and wellness amongst youth. Since it opened, the Garron Centre has served as a turning point for the Child and Adolescent Mental Health program. Over the past 12 months there has been a 71 per cent decrease in the number of aggressive incidents. Patients feel safer in the new space and have been able to build a faster therapeutic rapport with staff. This makes patients more receptive to treatment making time spent more productive. Although the number of patients admitted to the unit has increased, the length of their stay has dramatically decreased from an average of 23 days in 2009 – 10 to 8.8 days today. Being admitted to a hospital is upsetting for most children. That experience is made harder when patients with different mental

illnesses and ages are mixed together. This problem was solved in the Garron Centre with mini-units. Patients say that the environment has decreased the stigma associated with mental illness. Having more therapeutic places such as an exercise room, music room and activity spaces has allowed for normal adolescent activities during treatment in the Garron Centre. In addition, the private learning space that was designed within the large classroom has provided a quieter, smaller area for students to access.

The Garron Centre is a vision of an evidence-based healing space that came to life because of a community that cared. It was made possible by the transformational gift of $5 million – part of a $10 million donation to the IWK Health Centre – from Myron and Berna Garron, along with significant donations from local philanthropist Marjorie Lindsay, RBC, Kim and John Horrelt of PEI and The Windsor FoundaH tion, among many others. ■ Amy Totten is a Communications Specialist at IWK Health Centre.

Are you


about device-related rebound pulmonary hypertension? It is vital that the inhaled drug delivery device used in the treatment of pulmonary hypertension helps to manage abrupt discontinuation of drug, which may lead to rebound pulmonary hypertension. Delivery devices equipped with alarms and backup systems alert you to a device delivery problem before a decline in your patient’s condition becomes the “alarm”.




Mom, Erin Mo ri an nd he h r tw twin inss Park Pa ark rker err and Rhyss, wh w o we ere re par artt off the he cudd cu ddle dd le program at So le out u hl hlak ake e Regionall Health Centre e.

Cuddler program

promotes skin-to-skin for tiny patients By Kathryn Perrier

ake one look around the Neonatal Intensive Care Unit (NICU) at Newmarket’s Southlake Regional Health Centre and you might notice something different. Amongst the gentle hum of activity and the glowing lights from the phototherapy is a team of volunteers who are offering something so much more than a magic pill or medication – a simple hug! Southlake’s NICU Cuddler Program is a new take on traditional medicine and is helping the Hospital’s littlest patients get all the hugs and cuddles they need to grow. The program was developed by staff who recognized the importance of skin-toskin contact for babies who may be in the NICU for an extended time. The concepts of skin-to-skin morphed into the Cuddler Program; the goal of the program is to give babies contact when parents can’t be there. Sandra Payne is a Paediatric NICU Nurse Educator at Southlake. She is the lead behind the Cuddler Program at Southlake, which was first introduced in 2012. Payne helped recruit highly-trained volunteers who are available each day to help give hugs and cuddles to babies when parents are unable to provide them with the hugs they need. Payne says staff and volunteers are putting the scientific proven-benefits of skinto-skin contact for babies into practice. “Being held by a caregiver, is a natural, no-cost intervention that has been found to have many beneficial effects for babies in hospital.”



Payne is working with the Canadian Association of Paediatric Health Centres (CAPHC) and Dr. Christine Chambers, clinical psychologist and Professor of Paediatrics and Psychology & Neuroscience at Dalhousie University, to explore the science and raise awareness about the benefits and powers of touch. Dr. Chambers’ research examines developmental, psychological, and social influences on children’s pain. According to Dr. Chambers, all forms of touch have positive effects but skinto-skin contact, especially with mothers, has been found to be particularly powerful. Research has shown that the touch of a mother or a familiar adult or sibling helps ill and preterm infants cope with the many painful procedures they receive (sometimes as many as a dozen per day) as part of their routine care in neonatal intensive care units (NICUs). Other benefits of touch include: promotion of normal and constant heart rate, improving sleep, supporting healthy weight gain, increased rates of breast feeding, and improved parent-baby relationship. There is also evidence that early touch can facilitate a positive transition for parents into their new role as a caregiver, and constructively establish the parent-child relationship. And it’s a huge relief for many new parents like Jenn and Jason Delic. The Delic’s had to leave their daughter, Jade, who was born weighing a mere three pounds, 12 ounces, in the NICU at Southlake for two weeks. Jenn and Jason both agree that leaving Jade in hospital was really tough. “Walk-

ing out of the NICU and knowing we were leaving our baby girl behind was really tough,” says Jason. “Our family didn’t feel complete. As her mom, I naturally wanted to be with Jade 24-7 and then I would come home and it was equally as hard because I didn’t want to have to leave my two girls to go back to the Hospital,” says Jenn. Payne credits the NICU staff and volunteers with the success of the program. “We all know the importance of the power of touch. We are committed to giving babies the hugs they need to help them grow.” “The reaction we’re getting from volunteers is amazing. They tell us that they can’t wait to get in and cuddle the babies and that it is the best part of their day. They feel very lucky to be part of giving these babies what they need.” “If a baby could speak to us then I think they would say thank you,” says Sherry Guchardi, Manager, Paediatric and Neonatal Intensive Care Unit. “It’s amazing to be able to comfort them when their parents aren’t there.” She is very proud of the program and its benefits. “Parents tell us that they feel so relieved and supported. They have comfort in knowing that when they can’t be there, their babies are still being hugged and loved,” says Payne. Jenn says she felt really torn when she had to leave her newborn Jade in the NICU but she credits the staff at Southlake and the Cuddler Program volunteers for their support for her and her family during that time. “It helped so much to know that there were nurses and volunteers

who would come and just hold her and cuddle her and squeeze her for us when we couldn’t be there,” says Jenn. “It gave us the peace-of-mind that when we were home with the girls that there were ladies in the hospital, volunteers, cuddling our Jade.” It was a bittersweet homecoming for Jenn and Jason when they brought Jade home after her two-week stay in the NICU. They were happy to have their baby girl home, but felt sad to say goodbye to the volunteers who played such an important role in Jade’s early development. “They really supported us while we were there. I think a hug and a cuddle is so important to a baby. Children need to feel hugged and loved and they need to feel affection.” Recently, Southlake began working with Huggies® Canada to raise awareness about the importance of touch. The No Baby Unhugged program was filmed in Southlake’s NICU featuring some of Southlake’s Cuddler volunteers. Payne says that recently, many people from the community have been contacting Southlake about ways they can get involved and help with the Cuddler Program. Payne credits Huggies® for helping to raise awareness in the community about the importance of the power of touch. She says their support has allowed Southlake to expand and improve this program and introduce it in other areas of the Maternal H Child Program. ■ Kathryn Perrier is a Media and Government Relations Specialist at Southlake Regional Health Centre.



Determining risk factors for kidney disease in

Children with type 2 diabetes By Adrian Alleyne ario Hayden was diagnosed with Type 2 diabetes when he was just 13-years-old, now the 19-year-old is leading a productive life because of research being done at the Children’s Hospital Research Institute of Manitoba and Children’s Hospital-HSC Winnipeg. “Diabetes has changed my life a lot. When I found out I had it my heart sank, it’s hard to explain. It’s hard that I can’t eat what I want, I have to take insulin every day and no one in my immediate family knows what I go through,” Hayden explains. At the Children’s Hospital Research Institute of Manitoba, the research facility owned and operated by the Children’s Hospital Foundation of Manitoba, Dr. Allison Dart, MD, MSC, FRCPC, is working to help determine the risk factors for kidney disease in youth with Type 2 diabetes. Currently Dr. Dart, who is also a paediatric nephrologist at HSC Children’s and an assistant professor in the Department of Paediatrics and Child Health at the University of Manitoba, is leading a study that aims to identify the most important risk factors connected to early kidney disease in youth with Type 2 diabetes. Since Type 2 diabetes is a relatively new disease in youth, there isn’t a lot known about the factors that lead to kidney failure.


This is a high risk group of kids who have adult complications in childhood. The risk factors linked with kidney failure in adults do not explain what we are seeing in youth. The project is entitled Improving renal Complications in Adolescents with Type 2 diabetes through Research (iCARE) cohort study. Currently there are 162 youth from Manitoba and Northwestern Ontario enrolled in the study, however, Dr. Dart and her team are hoping to enrol up to 400 more to expand iCARE into a national study. Participants are recruited through the Diabetes Education Resources for Children and Adolescents (DER-CA) and the paediatric renal/Type 2 diabetes combined clinic located at HSC Children’s and have regular visits at the Children’s Hospital Research Institute of Manitoba. DER-CA provides education on diabetes to affected children and their parents/caregivers and the community with services provided by a physician and an education team consisting of a dietitian, nurse educator and social worker.

During their visit participants take part in a full day of testing once a year that includes blood and urine tests, a formal test of their kidney function, a 24-hour blood pressure monitor and an ultrasound of their kidneys. A questionnaire is completed that helps researchers determine their stress levels and they also supply a hair sample so that the stress hormone cortisol can be measured directly by a lab in London, Ontario. “We’re trying to decrease dialysis in kids with Type 2 diabetes. They’re reaching end stage kidney failure in their mid-30s at which time they need dialysis or a transplant. They seem to have a more rapid progression,” says Dr. Dart, a member of the Diabetes Research Envisioned and Accomplished in Manitoba (DREAM) research team based at the Children’s Hospital Research Institute of Manitoba. “This is a high risk group of kids who have adult complications in childhood. The risk factors linked with kidney failure in adults do not explain what we are seeing in youth. This study is using state of the art testing to measure traditional things like blood sugar control, blood pressure, and kidney filtration to more accurately assess if they contribute to kidney disease in youth. We are also testing links with stress and mental distress, which we think are also important in this disease, potentially because they increase inflammation in the body.” In addition to taking part in the iCARE study, Hayden is also a member of the iCARE Participant Advisory Group that was created by Dr. Dart and her research team earlier this year. The goal of the group is to ensure the latest research is translated into improvements of care and outcomes for youth with Type2 diabetes. “One of the main reasons I participated in the focus groups is so I can voice my opinion on this illness and maybe make it a little better for other people. Being part of the advisory group has helped me realize that I’m not the only one going through this and that if we all stick together as a big support link we can all get through it,” Hayden says. Working with other members of her research team, Dr. Dart is preparing to publish the initial results soon and hopes to expand the study to seven other sites across Canada. “As a kidney specialist, I see these kids in clinic with established kidney disease and don’t have good data to know how to best treat them. As a clinician this is frustrating,” says Dr. Dart. She adds, “We started this study to gain a better understanding of what’s causing complications. This knowledge will then lead to target treatments to H prevent or delay kidney disease.” ■ Adrian Alleyne is the Media and Communications Coordinator at the Children’s Hospital Research Institute of Manitoba.

Dr. Allison Dart is working to determine the risk factors for kidney disease in youth with Type 2 diabetes.

January 13-17, 2016 Hamilton Convention Centre Hamilton

We are preparing to host the 13th Annual Canadian Paediatric Review Program. This is a national review course primarily designed for all senior paediatric residents who are completing their training. The course is also open to junior paediatric trainees and paediatric consultants in clinical practice. This review course is intended as a knowledge consolidation and assessment exercise. Online Registration Will Open in September! Further details regarding the course, please contact us at:

Wednesday May 25, 2016 Hamilton Convention Centre Hamilton

5th PEDIATRIC NEURO-DEVELOPMENTAL AND BEHAVIOURAL CONFERENCE An instructional morning that includes didactic lectures led by representatives of Child Neurology, Developmental Pediatrics, Child Psychiatry and related specialties followed by case-based discussions in small multidisciplinary breakout sessions. Hot Topics: Therapeutic Use of Cannabis in Epilepsy Exercise in Children with Chronic Health Problems Non-Suicidal Intentional Self-Harm Link Between Diet & Behaviour—Food for the Brain ADHD Tools for Schools Tourette Syndrome Online Registration Will Open in October! Further details regarding the course, please contact us at:




SickKids works to help

bring kids home sooner By Suzanne Gold oing home after a hospital stay can bring to the surface a complex mix of emotions for children and families: relief and happiness, combined with nervousness about whether the timing is right and the necessary supports and resources are in place. For health care providers, providing excellent care and equipping families with the tools for a successful discharge, while ensuring that health care resources are used appropriately and effectively by reducing unnecessary prolonged hospitalization, are always at the forefront. As part of its continuous efforts to provide safe, efficient, coordinated, evidencebased and high-quality care for each patient, The Hospital for Sick Children (SickKids) has made it an organizational priority to reduce the average length of stay for patients whenever possible by eliminating unnecessary waits or delays in care and treatment caused by inefficiencies in the way care has traditionally been provided. The Length of Stay initiative aims to restore children to health as quickly as possible and move them to an environment where they can be surrounded by family, friends and the comforts of home; to provide inpatient care for more children who need it by freeing up beds; and to reduce costs associated with the unnecessary time a child spends in hospital.


The Length of Stay initiative aims to restore children to health as quickly as possible and move them to an environment where they can be surrounded by family, friends and the comforts of home...

“Children shouldn’t have to stay in the hospital any longer than they need to. We are very focused on providing a family-centred care environment; however, we recognize that it’s stressful for families to have a child in a high-tech, incredibly busy hospital setting,” says Marilyn Monk, Executive Vice-President, Clinical, and Executive Sponsor of the Length of Stay Task Force at SickKids. “The longer children remain hospitalized, the more they are exposed to risks associated with handoffs, hospitalacquired infections, and other known risks of hospitalization.” Through a series of projects piloted on a number of units across SickKids, the average length of stay has dropped from HOSPITAL NEWS AUGUST 2015

6.82 days in 2013-14 fiscal year to 6.63 in 2014-15, surpassing a target of 6.75. This improvement equates to more than 2,600 patient days with the volume of patients seen in 2014-15 at SickKids. “We have already made great strides in this area: reducing the duration and costs of unnecessarily prolonged admissions, while expanding our capacity to admit and care for growing numbers of very ill children coming through the emergency department or through direct transfers from community hospitals,” she adds. One of the most significant Length of Stay transformations took place on the surgical inpatient unit, where clinical staff were constantly balancing the higher level of care required for children with more acute or complex medical needs, along with those who had undergone less complex surgeries and were expected to have more straightforward recoveries. Through the creation of a surgical short stay area, patients from seven surgical specialties whose length of stay was anticipated to be under two days were grouped together in one section of the unit. This enabled staff to develop an environment and culture tailored to the needs of this specific group of patients, with a dedicated nursing team. New workflows and standardized checklists have been developed to improve the coordination of care, including discharge planning, and follow-up resources. Families are now provided with educational material in a variety of languages through AboutKidsHealth, and receive post-discharge follow-up phone calls to address any questions they may have after returning home. The creation of the surgical short stay area last year resulted in a 30 per cent reduction in patients’ average length of stay, including many children who were safely discharged the same day they had their procedure. Patient satisfaction rates increased, and families expressed that they felt better prepared for discharge. Additional projects to reduce average length of stay include: Medicine Alternate Care Environment, known around SickKids as “ACE Space”: a new care model designed for patients who require inpatient services but do not need overnight nursing care and monitoring. Patients are assessed to determine whether an overnight stay is necessary; if not, they can receive care by an inpatient team during extended daytime hours (8 a.m. to 8 p.m.), and go home with their family overnight. If needed, they can return to the ACE Space the following day – for example, to receive IV treatment. The implementation of the ACE Space resulted in a reduction of 385 patient days over the course of nine months within the Paediatric Medicine inpatient units, allowing these units to accept more children requiring a higher level of care. Clinical practice guidelines: reducing variability through the development of standard approaches for diagnosis, treatment and/or follow-up for select patient populations. These efforts focused on the

development of improved family education material and establishment of dischargereadiness criteria for six high-volume patient populations, including appendectomy and scoliosis-correction surgeries. Engaging patients and their parents in discharge planning early on enables care teams and families to work together with discharge in mind throughout the child’s hospitalization. Care coordination practices: a consistent bundle of activities used on all clinical units across SickKids to better prepare patients for a timely discharge, through standardized family-centred rounds, regular discussion of estimated discharge dates, and use of a discharge-readiness checklist. Building on the success of these initial

pilot projects, SickKids continues to work toward reducing the average length of stay – part of the organization’s commitment to ensuring that children receive the right care, at the right time, in the right place. “The changes we have made reflect the growing trend toward patient-centred care,” says Travis Beamish, Program Manager of Strategic Initiatives at SickKids. “We are ensuring that our inpatient services are properly configured around the needs of our patients when they are here, but also providing care in a way that allows children to go home with their families H sooner.” ■ Suzanne Gold is a Senior Communications Specialist in Media Relations at SickKids in Toronto.

Improving the quality of life for children and youth with special needs By Jennifer Churchill


stablished in 1978, the Ontario Association of Children’s Rehabilitation Services (OACRS) is the collective voice of 21 paediatric rehabilitation centres across Ontario. As a membership-based oganization, we are unique to Ontario. Every year, our members deliver innovative therapies and treatment to almost 80,000 children and young people. OACRS centres focus on ensuring that children with physical, developmental and communication challenges and their families have access to high quality, family-centred rehabilitation services. OACRS work includes advocacy on behalf of children and youth with special needs and ensuring that, collectively, we provide evidence-based, efficient and effective service. OACRS governance is a model of shared leadership. Working together and through project leadership committees, our members combine their broad range of skills and expertise to identify clinical best practices, promote standardized processes and develop sectorwide decision-making processes. Our province-wide, common technology platform provides a shared electronic record and reporting system to support this work. We regularly provide forums for information exchange and policy deliberation. With our research partners, the Bloorview Research Institute and the CanChild Centre for Childhood Disability Research, we are building a childhood disability common research agenda. Our Annual Fall Conference – Change. Challenge. Opportunity. November 1-3 in Toronto – is Canada’s premier conference on the treatment of children with special needs. It brings together over 300 sector

leaders and family members from across the country and around the world. Highly interactive and participative, it will feature the latest research, best practices and emerging trends. Family-centredness, including listening to families’ stories, is integral to every aspect of our work. The OACRS Family Advisory Council provides us with invaluable advice about what matters to children and youth with special needs, and their families. Families also actively participate in planning our annual conference agenda. The conference devotes one full day for families to meet with other parents who have children with special needs. In addition, two of the four conference streams this year focus on family: client and family-centred care, including cultural competency; and family engagement. The other two streams are rehabilitation service delivery; and leadership and governance. In response to parents telling us that they want their children to be able to participate in all aspects of life, including post-secondary education, we created the OACRS Scholarship Program. It annually recognizes five students who have received services from an OACRS centre and are pursing post-secondary education or a career goal. Community-based, OACRS centres will do all that they can to ensure that a child or young person with special needs achieves their goals, even as these change over time. Our staff and volunteers are with them all the way – helping them to build their own capacity to make the most of their own potential and participate in all aspects of life. For more information on OACRS visit H ■ Jennifer Churchill is President and CEO, OACRS.



Creating possibilities

for kids with disabilities By Lydia Hanson


olland Bloorview Kids Rehabilitation Hospital is Canada’s largest children’s rehabilitation hospital focused on improving the lives of kids with disabilities. We help kids and youth with disabilities reach their fullest potential through quality clinical care and innovative therapies, applied research, and participation and inclusion programs. We are a provincial resource for children with cerebral palsy, acquired brain injury including concussion, muscular dystrophy, amputation, epilepsy, spina bifida, arthritis, cleft-lip and palate, autism, and other physical and developmental disabilities. We strive to continuously improve the quality, coordination, and delivery of care at both our hospital and health system levels. Below are some of the initiatives we are working on.

Leading the system: Coordinated care for medically complex kids

One of our goals is to support innovative models of care in collaboration with our system partners to help children with disabilities and their families more easily and efficiently navigate the health care system. In addition to a number of programs and partnerships that help facilitate the often challenging transition for clients into adult care, we are also collaborating on a longterm initiative that helps provide a continuity of care for some of our most vulnerable, medically complex children. The Integrated Complex Care Model (ICCM) is an initiative of the Toronto Central Local Health Integration Network in collaboration with The Hospital for Sick Children, the Toronto Central Community Care Access Centre and Holland Bloorview. Through the initiative each client and family is partnered with key health care workers who are responsible for facilitating their care on an ongoing basis. These key health care workers ensure transitions between the organizations are coordinated, information is shared, service duplication is reduced, and ultimately help improve the overall experience of care for clients and families.

Transforming care: Focus on youth concussion

Last year, Holland Bloorview launched one of the first concussion centres in the world dedicated exclusively to paediatric concussion. Children and youth require a unique approach to concussion care because their brains are still developing. The Concussion Centre includes clinicians specifically trained in paediatric brain injury and researchers who are leading experts in the field of youth concussion. The centre is focused on getting kids back to doing what they love after sustaining a concussion, including recreational

and competitive sports. The Concussion Centre focuses on three key pillars: education, research, and clinical services. It is the interaction between these pillars that makes the Holland Bloorview Concussion Centre unique. Our education program and clinical services are informed by the most up-to-date research in the field of paediatric concussion and our research lab aims to uncover answers to questions that are generated through our educational and clinical programs.

Accelerating knowledge: Mapping paediatric rehabilitation in Canada

Evidence must always inform health care improvements. In the paediatric rehabilitation sector, we know there is a lack of information related to access, effectiveness, efficiency and overall quality of service. While there have been significant advances in standardized and reliable data in the adult sector, paediatrics and rehabilitation have only recently been a focus. To help increase knowledge in our sector, this summer Holland Bloorview is mapping the state of paediatric rehabilitation nationally to understand the level and types of service delivery available. This work is being conducted in partnership with Canadian Association of Paediatric Health Centres (CAPHC) and will be shared at the CAPHC conference this fall. This work will also inform CAPHC’s Paediatric Rehabilitation Reporting System (PRRS) initiative, which will for the first time provide benchmark data for paediatric rehabilitation organizations to better understand challenges and opportunities in this sector.

Inspiring our people: Walking the talk with family centred care

Client and family centred care (CFCC) is one of Holland Bloorview’s core values and our organization believes that putting this value into action every day has a significant positive impact on the care experience of the clients and families we serve. We know that to ensure CFCC is practiced throughout our organization we must support our employees and help them integrate the key actions and behaviours of CFCC into their daily work. We also know that a great way to learn is through simulation: watching or acting out realistic situations and then debriefing as a group. Holland Bloorview’s Teaching and Learning Institute in collaboration with our Client and Family Integrated Care and Collaborative Practice teams began delivering CFCC simulation training to new and existing staff and students in 2014. An inter-professional group that included families developed the simulation scenarios used in the training. The feedback from participants has been overwhelmingly positive: the train-

Last year, Holland Bloorview Kids Rehabilitation Hospital launched one of the first concussion centres in the world dedicated exclusively to paediatric concussion. The Holland Bloorview Concussion Centre includes clinicians specifically trained in paediatric brain injury and researchers who are leading experts in the field of youth concussion. ing has improved their understanding of CFCC, enhanced communication skills and confidence, and helped them make changes in their daily practice. For more information about Holland Bloorview Kids Rehabilitation Hospital,

visit, or follow us on Twitter @HBKidsHospital, Facebook H and LinkedIn. ■ Lydia Hanson is a Senior Communications Associate at Holland Bloorview Kids Rehabilitation Hospital.

The BC Association for Child Development and Intervention (BCACDI) BCACDI is a provincial non-profit organization, founded in 1996, which provides advocacy and opportunities for collaboration to 31 member agencies throughout British Columbia. Member agencies are non-profit, accredited, and provide community based diagnostic, developmental, intervention and support services for children and youth with special needs and their families. BCACDI agencies contract with BC’s Ministry of Children and Family Development to deliver Provincial Government core programs such as the Infant Development Program, Supported Child Development, and Early Intervention Therapies (OT, PT, SLP). Since 2008 there has been essentially no increase in resources to support the delivery of these core programs despite rising demand, lengthy wait times for access, and increasing complexity in the children and families receiving services. BCACDI member agencies have risen to the challenge through innovative practice and operational efficiencies. The mentoring and support provided through membership creates a unique learning environment for Executive Directors of agencies to discuss innovative service delivery models, referral prioritization processes, and other strategies to help meet the needs of their respective communities. A key priority for BCACDI moving forward is continuing to strengthen our database regarding service demand and wait times. Engaging with CAPHC and CIHI in the national Paediatric Rehabilitation Reporting System is further building the profile of community based paediatric rehabilitation services, and BCACDI is optimistic such initiatives will provide Governments with further evidence of the need for more resources to support service delivery in this sector. To learn more about BCACDI please contact the Provincial Advocate, Jason Gordon, at




Laying the foundation for

future health By Alex Munter


ecently the Children’s Hospital of Eastern Ontario (CHEO) and eight other community partners launched a new Navigator Program to help families whose children have highly complex medical needs. The program will support parents in dealing with the economic and emotional pressures and social isolation of caring for their children. This is a good example of how new and innovative service models are needed to meet the real needs of children, youth and families. Their needs do not fit tidily into separate silos of health, education, social supports and community – they span all of those areas and arise at home, in hospital, at school and everywhere else children are active. For the past five years, CHEO and its partners have already collaborated in the Champlain Complex Care Program to better coordinate the medical services for these medically fragile and technologically dependent children. The program has shown dramatic results in decreasing emergency room visits, days of hospitalization, and overall cost of supporting these patients. The families’ satisfaction with their health care experience has also greatly increased. What’s exciting about these pilot initiatives is that they show even the most seriously ill children can benefit from more creative delivery of health and

social services. How much more could be accomplished by better connecting care and focusing on families across the system? Two of the largest challenges in health care today are providing for the needs of the most complex, medically fragile patients and designing a system to meet the needs of the chronically ill.

Currently, one in three Canadians has at least one chronic condition, and this figure is expected to rise as our population ages.

We know that Canadians are experiencing more chronic illnesses than ever before. Currently, one in three Canadians has at least one chronic condition, and this figure is expected to rise as our population ages. The cost is a staggering $90 billion in terms of treatment and lost productivity. What’s more, chronic diseases are now the leading causes of death worldwide. But less often noted is that most adult chronic disease begins in childhood. If we

don’t change our current trajectory, by 2040, up to 70 per cent of today’s children will be overweight or obese adults. These kids might be the first generation whose health status could be worse than their parents’ – thanks to chronic problems correlated with obesity, from heart disease, diabetes and cancer to asthma. Mental health is another domain where problems starting in childhood and youth can become lifelong impediments. One in five kids in Canada has a diagnosable mental health disorder – and the numbers seeking help are growing exponentially. Today’s children will be tomorrow’s

adults. We need to invest in the health and wellbeing of our children for a brighter and more prosperous future. Through early intervention, we can change the entire trajectory of a young person’s life, altering both their physical and mental health, as well as their life expectations. Furthermore, studies show a direct link between health, nutrition and economic growth. A strong paediatric focus in healthcare will reduce overall health costs and increase ecoH nomic productivity in the future. ■ Alex Munter is CEO, Children’s Hospital of Eastern Ontario (CHEO).

Patients, parents and clinicians should have a voice in

prioritizing child health research By Caitiln McNamee-Lamb

atients, parents and clinicians should have a voice in selecting and prioritizing child health research topics because they may have different priorities than health researchers, a new study says. The study, which was presented at the Canadian Paediatric Society’s 92nd annual conference in Toronto, found the most frequently asked questions among parents and primary care physicians were related to: • The impact of electronic devices on development • Appropriate discipline strategies • Interventions to promote healthy sleep “When choosing how to prioritize research topics in an environment where there is limited funding, it’s important to involve patients and their families, as well as the front-line paediatricians and family doctors who provide care to children,” says Dr. Mikael Katz-Lavigne, lead author of the study, and Fellow in Academic General Paediatrics at The Hospital for Sick Children (SickKids). “In-



cluding them in the research process also encourages the study of outcomes that are important to both health care consumers and providers.” The research team sent an online questionnaire to parents of children newborn to five years old enrolled in a primary care practice-based research network in Toronto and to paediatricians and family physicians in the Ontario Medical Association. The questionnaire sought to identify the most important questions about keeping kids healthy as they grow up, and whether differences existed between questions submitted by parents and clinicians. Most of the questions pertained to nutrition and obesity, illness prevention, parenting and child behaviour. There was general consensus between the 115 parents and 42 clinicians who responded to the questionnaires; however, parents were more likely to ask questions about how much screen time was healthy (eight per cent of parent submissions vs. 4.6 per cent of clinician submissions) and sleep (8.7 per cent vs. 6.3 per cent) than the clinicians.

Dr. Mikael Katz-Lavigne The parents who participated all had children enrolled in TARGet Kids! (The Applied Research Group for Kids!), a collaborative project between SickKids and St. Michael’s Hospital that brings together child health researchers and community practitioners with the goal to improve children’s health through effective and timely primary care.

“Involving patients, families and clinicians in setting research priorities is part of the growing emphasis on patientcentered healthcare. Since patients are the ones trying to remain healthy or who experience illness firsthand, their priorities are often different than those of researchers, and they may have different views on how to measure outcomes,” says Dr. Katz-Lavigne. “In the past, researchers made all of the decisions about which topics to study, but our project identifies topics that will promote buyin from the public and decrease waste in scientific research.” Parents and clinicians’ top 10 research questions in paediatric preventive care are expected to be published at a later date in a peer-reviewed journal. This paper is an example of how SickKids and St. Michael’s Hospital are contributing to making Ontario Healthier, Wealthier and Smarter. www.healthierH ■ Caitiln McNamee-Lamb is a Senior Communications Specialist in Media Relations at SickKids in Toronto.



Stollery Children’s Hospital By Tracy MacDonald

stablished in 2001, the Stollery Children’s Hospital in Edmonton, Alberta is a paediatric hospital that provides tertiary and quaternary care and support to a patient population from across Alberta, northern British Columbia, Saskatchewan, Manitoba, Nunavut, Yukon and Northwest Territories. The Stollery has among the highest inpatient volumes of any children’s hospital in Canada. With virtually half of the 224 beds at the hospital being critical care beds within the neonatal intensive care unit (NICU), paediatric intensive care unit (PICU), and paediatric cardiac intensive care unit (PCICU), staff and physicians at the Stollery care for some of most critically ill children in western Canada. Over 40 per cent of the children treated at the Stollery are from outside the Edmonton area. Staff and physicians at the Stollery are constantly faced with the challenge of providing care and support to paediatric patients in one of the largest catchment areas in the world – a geographical region that encompasses over 500,000 sq. km. As western Canada’s primary referral centre for paediatric cardiac surgery, the Stollery is responsible for providing a full array of cardiac critical care services in support of the Western Canadian Children’s Heart Network with the second highest volume of paediatric surgical cases in Canada. The Stollery is home to Canada’s second largest paediatric heart transplant program as well as the largest extracor-


Dr Allan de Caen and Stollery Critical Care transport team. poreal life support (ECLS) program in Western Canada. The hospital’s paediatric critical care program provides extracorporeal membrane oxygenation (ECMO), continuous renal replacement therapy (CRRT), therapeutic plasma exchange (TPE) and ventricular assist device (VAD) technology. These life saving support methods and therapies are offered to over 50 patients per year with excellent survival outcomes. In 1995 a PICU Transport Team was created to help bring intensive care to children outside the Edmonton area. Over the past

ten years, the Stollery Critical Care Transport Team has become one of the busiest paediatric transport teams in the country, transporting approximately 250 paediatric patients from across western Canada to the Stollery annually for emergent, urgent, and critical care. This experienced team’s leadership is actively involved in national initiatives through CAPHC (Canadian Association of Paediatric Health Centres) to establish standards through Accreditation Canada for infant and paediatric inter-facility transport and is developing and fostering related research initiatives.

The Stollery Children’s Hospital is committed to meeting the ever-changing needs of children and their families in an environment that integrates excellence in the delivery of care, education, and research. Staffed by highly skilled child health professionals from around the world, the Stollery Children’s Hospital is an internationally recognized centre for specialized H paediatric health services. ■ Tracy MacDonald is Senior Operating Officer at Stollery Children’s Hospital, Alberta Health Services.

Children’s Treatment Network of Simcoe York

Building brighter futures together By Sandy Thurston hen I first heard about the ‘network model’ that was going to provide service in York Region, Ontario I could not quite understand how it was going to work. I was against having multiple sites vs. one main treatment centre,” says Laura Meffen. Laura is proud mom to Emily. Emily is 16 years old and has n-glycanase deficiency, a rare genetic condition diagnosed in only 27 children globally. Emily uses a wheelchair and requires assistance for many of her activities of daily living. She loves anything pink and is very social. She is considered one of the highest functioning individuals with the diagnosis. Emily has been a Children’s Treatment Network (CTN) client since the network started 10 years ago. CTN serves more than 6,000 children and youth with multiple special needs in York Region and Simcoe County, Ontario by providing rehabilitation and clinical services, like other Ontario children’s treatment centres. However, CTN is a network, providing service through partner agencies in the health care, education and community sectors. This allows services to be delivered where families need them most – at home, at school and in the community. Because CTN primarily serves clients with multiple special needs, the need for families to have an integrated plan of care built on the family’s vision is one of the network’s key components. CTN’s single plan of care process provides just that. Instead of multiple therapists working


wards separate goals, families who have a child or youth receiving multiple services are able to enlist the services of a Single Plan of Care Coordinator who brings all members of a child’s team together. Collectively they build one plan based on the client and family’s priorities. One of the biggest barriers to implementing integrated care across organizations and sectors is sharing personal health information. CTN implemented a shared electronic client record, using a secure web-based platform. This allows all team members to review and update information, and coordinate services with other members of the team who may work for other organizations, decreasing the need for families to repeat their stories. Over 30 agencies across health, education and community sectors use CTN’s record and approximately 14,000 records have been opened to date. While the record has been successful, CTN continues to seek support to evolve the record, its user-friendliness and overall management. The impact of integrated care is best demonstrated through Laura’s experience. “I can easily get to any therapy session, but basically I do not have to travel because for the majority of my appointments, CTN staff comes to me. I do not have to take Emily out of school, and I don’t have to find babysitting for Emily’s brother. Today, I cannot imagine a life without CTN and the service providers from partner organiH zations who are part of our team.” ■ Sandy Thurston is the Director of Network Planning and Evaluation at The Children’s Treatment Network of Simcoe York.

Eastern Health, Janeway Site, St. John’s, Newfoundland The Regional Children’s and Women’s Health Program has both a regional and provincial mandate, delivering child health services at the Janeway Children’s Health and Rehabilitation Centre, as well as Provincial services including but not limited to: • Provincial Perinatal Program • Newfoundland and Labrador Fertility Services • Provincial Insulin Pump Program • Neonatal Transport Team, Pediatric Advice Line • Provincial Children’s Rehabilitation Service The Regional Children’s and Women’s Health Program provides primary, secondary & tertiary care services on both an inpatient and ambulatory basis to women and to children up to their eighteenth birthday. Women’s services include full range of obstetrics and gynecology. Pediatric services include medicine, surgery, emergency, perioperative, neonatal intensive care & pediatric intensive care. Outreach services include diabetes, asthma, cystic fibrosis, and hemophilia. Development & Rehabilitation services are provided to children and adolescents with developmental learning, craniofacial, and physical disabilities and challenges.

Services are provided at the following facilities: • Janeway Children’s Health & Rehabilitation Centre • General Hospital • Major’s Path • Outreach Sites in Gander, Grand Falls and Corner Brook • Burin Health Care Centre • Dr. G. B. Cross Memorial Hospital Clarenville • Carbonear General Hospital • Travelling Clinics throughout the Province

Challenges and Opportunities: • Continues to focus on regionalization of best practice initiatives in the Children’s and Women’s Health Program • Develop Capacity building initiatives for low volume but high acuity programs e.g. PICU • Endeavors to Implement identified Children’s and Women’s Health Program Operational Improvement (HCM) initiatives • Continues to explore LEAN Initiatives within the Program with great focus on patient flow in the Emergency Department






Focus 15

App supports paediatric cancer patients By Selma Al-Samarrai


en-year-old Jaylen Williams comes to the Princess Margaret Cancer Centre every weekday to receive radiation

therapy. He spends most of his appointments playing on a first-of-its-kind app in Canada – Rads4Kids – developed specifically for patients like him. This June, Princess Margaret Cancer Centre and SickKids launched Rads4Kids, an interactive app for paediatric radiation patients. Funded by The Princess Margaret Cancer Foundation, the app is designed to enhance children’s understanding of radiation therapy and to improve communication between doctors, paediatric patients and their families. Rads4Kids can be used by any medical centre where radiation therapy is administered.

Princess Margaret Cancer Centre and SickKids launched Rads4Kids, an interactive app for paediatric radiation patients. Jaylen began experiencing pain in his right shoulder and ribs late last year. As an active child with a passion for sports, his father Stephan Williams was sure it was a sports-related injury. Shortly after, then nine-year-old Jaylen was diagnosed with embryonal sarcoma of the liver, a rare childhood cancer.

Jaylen Williams with dad Stephan Williams. “It was extremely shocking. He’s such a healthy and active child,” explains Stephan. “When he started complaining about pain in his shoulders, I thought it was a pulled muscle or a pinched nerve.” Three months later, in March 2015, Jaylen underwent a major surgery to remove a 10 by 10 by 12 cm tumour inside his liver. Jaylen began radiation treatment at Princess Margaret in June. The cancer centre treats approximately 130 paediatric patients like Jaylen every year.

Susan Awrey, one of the principal creators of Rads4Kids and Pediatric Radiation Nurse Coordinator at Princess Margaret and SickKids, says Rads4Kids offers patients and families pertinent information about their care and what to expect during treatment. “It is essential for children and their families to have a better understanding of what will happen during radiation treatment. It was time to update our resources for this very special population,” says Awrey.

Rads4Kids contains four main features, including: • Parent FAQs on radiation side effects, signs and symptoms and tools for helping your child cope with treatment • A game that illustrates radiation attacking bad cells in the body • A calendar of emoticons that allows kids to record how they feel • A story book that explains radiation therapy to children, which is available in both English and French “It’s a good app, it really helps me understand everything,” says Jaylen, who enjoys using Rads4Kids and uses it often. Dr. David Hodgson, radiation oncologist and Site Lead for the Pediatric Oncology Program, Princess Margaret, staff hematologist at SickKids, highlights the importance of communicating clearly with paediatric radiation patients. “For a child, radiotherapy is a big unknown. To be able to alleviate the uncertainty and present the information in a way that is familiar to kids by using the app is a really fantastic way of making them feel comfortable about their treatment,” says Dr. Hodgson. Jaylen completed his radiation treatment in July, after 16 sessions. He plans to spend his summer playing soccer with friends and enjoying the weather, before traveling to Jamaica for a H family vacation later this September. ■ Selma Al-Samarrai works in Public Affairs and Communications at University Health Network.

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16 Focus


Making multiple sclerosis treatment personal

MS affects nearly 100,000 Canadians, making it the most common disabling neurological disorder of young adults in the country.

By Geoff Koehler

eurologist Dr. Jiwon Oh is using advanced imaging techniques to find differences between patients with multiple sclerosis. She hopes those differences will serve as biomarkers that help personalize treatment for each patient. Tailoring treatment to each patient is the backbone of good healthcare. And for patients with multiple sclerosis (MS), Dr. Jiwon Oh thinks the key to finding that backbone is in the spinal cord. MS affects nearly 100,000 Canadians, making it the most common disabling neurological disorder of young adults in the country. The condition is caused by the immune system attacking the insulating covers of nerve cells in the brain and spinal cord. The insulated covers, called myelin sheaths, transmit impulses from the brain and spinal cord. “My research looks at the damage MS causes to spinal cord tissue,” says Dr. Oh,



a neurologist with the MS Clinic of St. Michael’s Hospital. “I’m hoping to find biomarkers that will help clinicians monitor and more accurately predict how patients will do decades down the road.” Dr. Oh is one of the only researchers in the world using multiple advanced imaging techniques to look at the impact of MS on spinal cord tissue. Each of these techniques – including diffusion tensor imaging, magnetization transfer imaging and functional MRI – allow her to look at specific tissues in vivid detail. “The standard of care for MS is to begin by treating all patients with milder drugs and adjust treatment if symptoms progress, but we could do more for our patients if we had some way to decide who will have very bad MS and give those individuals stronger treatment from the beginning,” says Dr. Oh. Some of the more potent MS treatments have serious side effects, such as brain in-

Photo courtesy of Katie Cooper

Neurologist Dr. Jiwon Oh. fections or auto-immune disorders of the blood. Those risks are serious enough that specialists avoid using stronger drugs for all MS patients. The St. Michael’s Multiple Sclerosis Clinic team is comprised of: • five full-time MS neurology specialists • three part-time MS neurology specialists • one full-time nurse • one part-time nurse • another full-time nurse will join the team soon Dr. Oh said the benefits of aggressively treating MS for patients with severe symptoms are worth the risks. But if the spinal cord holds the biomarker key to MS severity, Dr. Oh and her research team will help

specialists personalize treatment and reduce risk for each patient with the disease. St. Michael’s is home to Canada’s largest MS clinic and one of the busiest in North America. The clinic has a roster of more than 7,000 patients, many of whom are part of clinical trials and research studies. The clinic recently received funding from the Ministry of Health and Long-Term Care for an additional fulltime nurse, which will allow the clinic to care for the growing number of patients H followed in the MS Clinic. ■ Geoff Koehler works in communications at St. Micheal’s Hospital.


Focus 17

Growing a baby-friendly Ontario By Kristina Niedra and Linda Young he mounting research evidence is clear. Among its many benefits, breastfeeding reduces the risk of Sudden Infant Death Syndrome (SIDS), certain cancers, obesity, respiratory disease and ear infections. In Ontario, the breastfeeding initiation rate is about 88 per cent. By hospital discharge, rates drop to about 60 per cent and at six months, exclusive breastfeeding rates are only about 30 per cent. In 2007, Toronto East General Hospital (TEGH) became the first hospital in the Greater Toronto Area and the second in Ontario to become Baby-Friendly designated. The Baby-Friendly Initiative (BFI) is a global strategy that establishes minimum standards for maternity services to promote, protect and support breastfeeding. To be designated as “Baby-Friendly,” health care facilities must demonstrate compliance with the Canadian adaptation of the WHO Baby-Friendly standards through an assessment process that includes a document review and site visit. The BFI also aligns with the recommendations from Health Canada and the Canadian Paediatric Society that suggest exclusive breastfeeding for the first six months is optimal. There is a growing body of evidence that BFI implementation increases breastfeeding rates. In their 2012 joint statement on infant feeding, Health Canada, the Public Health Agency of Canada and the Dieticians of Canada recommended that


Photo courtesy of Kevin Holm

hospitals and community health services implement the policies and practices of the Baby-Friendly Initiative. However, there are still only three hospitals in Ontario that have achieved the World Health Organization’s Baby-Friendly Initiative designation; Toronto East General Hospital, St. Joseph’s Hospital in Hamilton and Grand River Hospital. Why so few?

A common barrier to implementation is competing priorities and lack of resources. Other major barriers for Ontario hospitals include long-standing arrangements with formula companies that provide free formula to the hospital and mothers. Another challenge for many hospitals is the required 20 hours of breastfeeding education for front-line health care providers in the maternal-newborn areas. TEGH began

define your course M I C H E N E R . C A / C E

their formal journey to BFI designation in 2003 and like other hospitals, faced resource constraints. “We needed to be creative in diverting existing resources to support Baby-Friendly Implementation,” says Linda Young, Director for Maternal, Newborn, Mental Health, Interprofessional Practice and Organizational Learning. Continued on page 18


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18 Focus


Baby-friendly Ontario Continued from page 17

Members of the Child Development Program in one of the treatment rooms at the clinic in Scarborough.

Program expansion builds on a proud history of

leading-edge paediatric care

“We used late career funding, a special grant through the Ministry of Health and Long-Term Care, each year to have one of our Lactation Consultants do work to enhance our Baby-Friendly practices. One year she worked on a skin-to-skin initiative; another year, she focused on teaching mothers to hand express before they were discharged from the hospital.” In December 2012, the Ministry of Health and Long-Term Care made three major investments in improving breastfeeding supports in Ontario, one targeting the uptake of the BFI in hospitals and community health services in the province. TEGH was appointed the lead organization for this work, in partnership with the Provincial Council for Maternal and Child Health and the Best Start Resource Centre. The goal of this BFI Strategy for Ontario is to provide hospitals and community health services in the province with training, tools, guidance and resources to help them achieve the BFI designation and adopt clinical best practices in infant feeding that meet BFI designation requirements.

By Julie Dowdie s one of the first hospitals in Ontario to begin offering paediatric development assessments and neonatal follow-up care in the late 1980s, The Scarborough Hospital’s physicians and staff are well aware of the crucial difference this therapy can make for infants and children. Now, more than 25 years later, The Scarborough Hospital continues to build on these essential services for its youngest patients as it expands on its Child Development Program. “The Scarborough Hospital has a proud history of offering comprehensive, innovative paediatric care, and the expansion of our Child Development Program is another way we are continuing this longstanding tradition,” says Dr. Peter Azzopardi, Medical Director and Corporate Chief of Paediatrics at The Scarborough Hospital. The expanded program is part of a Scarborough Child Development initiative between The Scarborough Hospital and Rouge Valley Health System. In collaboration, both hospitals submitted a proposal advocating for the enhanced services to the Central East Local Health Integration Network (Central East LHIN), the regional health authority responsible for Scarborough. “This is a huge step forward for paediatric care in Scarborough, and a true example of two hospitals coming together to improve health care services for their community,” says Dr. Karen Chang, Chief of Paediatrics at Rouge Valley Health System. The expanded Child Development program includes the addition of Dr. Deepali Mankad, a new Developmental Paediatrician who joins the robust interprofessional team. Other members include two Paediatric Neurologists, a Child Psychologist, Social Worker, and several Speech Language Pathologists and Occupational Therapists. In addition, The Scarborough Hospital has a partnership with Toronto Preschool Speech and Language Services to provide paediatric speech language pathology services. Together, the team provides multi-disciplinary assessments for children with a wide variety of developmental problems, including autism, and cognitive and physi-



cal disabilities. The team offers speech and language therapy for children who have communication delays, as well as team surveillance assessments at regular intervals for at-risk infants following discharge from the Neonatal Intensive Care Unit (NICU).

There is a rising rate of children with autism who present with a wide variety of developmental delays. Identifying children who will most benefit from limited and case specific treatment resources as early as possible is a key task “Early intervention is crucial for these infants and children if they are to have the best health outcomes,” explains Dr. Azzopardi. “There is a rising rate of children with autism who present with a wide variety of developmental delays. Identifying children who will most benefit from limited and case specific treatment resources as early as possible is a key task for our developmental team. Our expanded Child Development Program will accelerate the pathway to care by establishing a diagnosis as early as possible, ultimately leading to a better quality of life for our young patients and their families.” In addition, the team will integrate with a large number of other providers to optimize their young patients’ outcomes. Partners will include: Holland Bloorview Kids Rehabilitation Hospital, Grandview Children’s Centre (Grandview Kids), and the Central East Community Care Access Centre for in home services, as well as a variety of other community resources. Dr. Avril Castagna, a Paediatric Neurologist at The Scarborough Hospital who is part of the program, adds that the addition of Dr. Mankad will be particularly beneficial for patients and families. “The unique qualifications of this specialist will allow her to perform formal

assessments and diagnose delays as a sole practitioner. This will enhance our ability to see many more children and triage them to the appropriate professional on our team,” she says. The Scarborough Hospital’s leadership in developmental assessments and neonatal follow-up care is just one example of the leading-edge programs and services it has offered for decades to one of Canada’s most diverse and vulnerable communities. In the early 1990s, The Scarborough Hospital was the first community hospital in Ontario to implement Total Parenteral Nutrition (TPN) where infants are fed through an IV. The Scarborough Hospital continued to innovate throughout the latter part of the decade. In 1997, it pioneered the ‘Til I Sleep program among Greater Toronto Area hospitals, which allows parents to accompany their children into the operating room until the child has been anaesthetized or ‘falls asleep’. The Scarborough Hospital was also the first in Canada to provide universal newborn screening for sickle cell disease in the late 1990s, which led to its adoption at all hospitals across Ontario, as well as in three other provinces. In 2007, Paedlink clinics were launched at both of the hospital’s two campuses as a way to quickly move children and their families from the Emergency Department to a specialized paediatric clinic and ease what can be a stressful experience for young patients. The Paedlink clinics have since been recognized as a leading practice by Accreditation Canada. In addition to these services, the hospital’s Paediatric program offers a Level IIC NICU, as well as inpatient paediatric care, day surgery, and both a paediatric day clinic and a newborn assessment clinic that are available to referred patients every day of the week. “Our goal is to deliver world-class care close to home for our patients and their families,” says Dr. Azzopardi. More information about The Scarborough Hospital’s Paediatric program can be H found on the hospital’s website. ■ Julie Dowdie is a Communications Officer with The Scarborough Hospital

In Ontario, the breastfeeding initiation rate is about 88 per cent. By hospital discharge, rates drop to about 60 per cent A number of new supports are now available to assist hospitals along BabyFriendly implementation. The BFI Implementation Toolkit explains the steps to BFI designation and includes practical tools (e.g. sample policies, work plan templates, poster examples, etc.) as well as lessons learned from designated sites. To minimize the costs associated with the required breastfeeding training, the BFI Strategy for Ontario has developed the BFI 20-Hour Course Toolkit. The resource includes the full content of the Ontario adaptation of the WHO recommended course, including presentation, speaker notes, participant work book and teaching strategies. Both toolkits are being rolled out across the province through free workshops. Additionally, three new resources have been developed to standardize information for patients and families including booklets on safe formula preparation, and feeding early and late preterm infants. Information about the toolkits, workshops, patient teaching materials and other resources is available at “At Toronto East General Hospital the BFI has had a significant impact on how we talk about, plan for and deliver care to families,” says Young. “The tools and supports provided have really helped us to focus on what the evidence is telling us is best practice and ultimately adjust and align our care delivery to ensure optimum H benefits for mothers and babies.” ■ Kristina Niedra is a Project Manager at Toronto East General Hospital and Linda Young is Director Maternal Newborn Child Mental Health, Interprofessional Practice and Organizational Learning at Toronto East General Hospital and Lead BFI Strategy for Ontario.

Focus 19


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20 Focus


Bariatric patients sharing lived experiences in Peer Support Program By Carla Peacock


hen faced with a chronic illness such as morbid obesity, every bit of support helps patients get to a state of optimum health and wellness. This is why Humber River Hospital has launched a Peer Support Program within our Bariatric Medical Program. The Medical Program focuses on nutrition, exercise and emotional support through weekly counselling sessions. These group sessions are led by a dedicated inter-professional team including a Registered Nurse, Kinesiologist, Dietitian, Medical Internist, and a Social Worker who provide clinical therapy to patients. The sessions also provide a natural venue for emotional support among patients with informal discussions, adding value to the Program. The Peer Support Program formalizes the patient-to-patient relationship by introducing previous patients as Peer Support Volunteers to the sessions to engage with current patients. By sharing their powerful stories of self-discovery, coping strategies, and their success, Peer Support Volunteers help support new patients at various points in the program. The Bariatric Peer Support Program has been in development since March 2015. It is the first of its kind to be introduced to the Bariatric Community in Ontario. The design, training and implementation of this initiative is a collaborative effort supported by the Bariatric Patient and Family Advisory Council who identified this as an important support for patients. Nisha Gonsalves, a Social Worker in Humber River’s Bariatric Clinic, helps patients with the emotional aspects of their weight loss journey. She was excited to work with the Council to develop this program. By sharing stories from previous patients, it normalizes the experiences, and provides peer encouragement and hope for new patients. “Including peer support relationships in the Bariatric Program means that current patients will receive greater emotional support during their journey,” she says. As a member of the Peer Support Working Group, Claudio Daniele is proud to see this program come to life. “I wanted to help because I felt emotionally distraught to see others suffering the way I suffered,”

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The Peer Support Working Group in the Bariatric Medical Program at Humber River Hospital. says Claudio. After 10 years of pain and increasingly limited mobility, he was referred to Humber River’s Bariatric Clinic and successfully completed the Medical Program, losing a significant amount of weight and avoiding surgery by learning to control his addiction to food. Peer support is about understanding another person’s situation empathetically through shared emotional and practical experiences. The notion of self-identification through story-telling, and sense of connection with another patient is based

on mutual understanding of their shared lived experiences. Jane Harris sees the value of sharing her lived experiences. She is one of Humber River’s first Peer Support Volunteers, “something I say might help someone else through a difficult day, and could prevent even one person from dropping out of the program.” Struggling with morbid obesity for almost 20 years made Jane feel terrified, helpless, and defeated. At the age of 42, she was in constant pain from marked osteoarthritis

throughout her whole body, she began relying on a cane. Now that she’s lost close to 130 lbs and is living a healthy lifestyle, she was happy to have the opportunity to give back in a personal and meaningful way while contributing to her own journey and self-growth. For Jane, volunteering in this program “makes me want to keep caring for myself as a role model.” Being a Peer Support Volunteer helps Claudio stay connected to the healing process of the program. He says that “on really hard days, giving back is the most important thing I can do because I’m helping myself and others.” Nisha and the Patient and Family Advisory Council are not stopping here, they hope to expand the program to include peer mentoring, and to launch it in the Bariatric Surgical Program. This is a very exciting time for Humber River’s Bariatric Program as we foster a sense of community engagement and support. At its fundamental core, this Peer Support Program is an example of how patient involvement and engagement is leading the design of support services for and by other patients rather being impleH mented on behalf of them. ■ Carla Peacock is a senior writer at Humber River Hospital.

Recovery Connections, a peer-support program with time for compassion By Emy Lafortune

n the sea of fast-moving stretchers and urgent cases that can be found in emergency departments, time is limited and few care providers have the opportunity to stop, listen and sympathize with patients. However, for people living with an addiction or a mental health disorder and for their families and peers, an attentive ear is often crucial in order to get better. Thanks to Recovery Connections, an innovative peer-support mental health program launched in April 2014, Ottawa patients admitted to three different hospital’s mental health units or emergency departments now have access to confidants who not only listen, but also understand what they are going through. With the help of the Addictions and Mental Health Network of Champlain, the financial support of Champlain’s Local Health Integration Network and the logistic guidance of Psychiatric Survivors of Ottawa, Recovery Connections was launched as a pilot project in September 2013 at Hôpital Montfort, before being also endorsed by the Queensway Carleton Hospital and The Ottawa Hospital. The program includes six peers and two family peer supporters, who all have a background in living with mental health problems, whether they personally experienced them or had a member of their entourage who did so. Their life experience allows them to establish a true connection with the patients: hospital staff recalls several patients who finally


Recovery Connections’ approach is non-clinical and focuses on support and compassion, pairing patients with a peer confidant. opened up to them after having initially refused any interaction with the medical team. Recovery Connections’ approach is non-clinical and focuses on support and compassion: the peer supporters do not chart any of their meetings and do not focus on goals other than helping the ones in need. Every day, they travel between the emergency departments and the mental health hospitalization units and make themselves available to the many patients who have lost hope or who need a sympathizing ear. Today, Recovery Connections has been extended to family members and is available for the patient’s entourage, who can meet the peer supporters in the same kind of support-oriented approach.

Since its beginnings, the responseto the program has been extremely positive and even led to new community programs being developed, like a young adults group. Additional French resources were also developed to accommodate Ottawa’s French-speaking community. The peer supporters are now an integral part of the three hospitals’ social work teams, and their rate of contact with patients exceeds by three times the level anticipated at the onset of the program. Thanks to them, compassion found a bigger time slot in hospitals’ busy H schedules. ■ Emy Lafortune is a Communications Intern at Hôpital Montfort

Focus 21


Denyse Henry (third from left) and the organizing committee for this year’s Canadian Ambulatory Care Association Conference.

Sharing best practices to enhance ambulatory patient care By Natalie Chung Sayers

hen we attend clinic appointments as part of our health care journey, or attend a loved one’s appointment as part of theirs, we are all participants in ambulatory care. Ambulatory care involves the expertise of thousands of health care professionals who collaborate to provide care to patients on a same day basis. Patients may have tests for screening, diagnosis or to monitor response to treatment, to attend appointments for follow up after hospitalization, to receive additional treatment, to undergo less complex procedures provided in a clinic or to attend rehabilitation sessions. In the outpatient setting, individuals are often seen for a series of intermittent visits that relate to chronic conditions. These visits range from a period of days, to years.


The Canadian Association of Ambulatory Care (CAAC) is the first organization in Canada with an interdisciplinary health care professional membership that aims to enhance practices and education in ambulatory care. “Health care professionals support patients on a continual basis,” says Denyse Henry, Manager, Medical Outpatient Procedures, Sunnybrook Health Sciences Centre. “This relationship also helps practitioners to proactively manage patients and prevent situations from escalating to hospitalization.” That’s a level of support patients really appreciate, adds Henry, who is also a Registered Nurse. Better primary prevention also reduces potential costs on an already burdened health care system. In 2012, Henry founded the Canadian Association of Ambulatory Care (CAAC), the first organization in Canada with an interdisciplinary health care professional membership that aims to enhance practices and education in ambulatory care. “At Sunnybrook, we are leaders in health care innovations,” says Henry, “and it’s that environment that has fostered my interest to establish a forum like this for the exchange of ideas.” In May, the CAAC held its third annual conference, Ambulatory-based Care: A Framework for Preventable

tions, which featured presentations from Canadian and international speakers. “The association has grown in membership and profile,” she says. “We are increasingly recognized for our expertise and are consulted by Canadian organizations and internationally.” “It was great to see a lot of representation of health care professions across the care continuum,” comments Adam Saporta, Project Manager, Outpatient Services, St. John’s Rehab, Sunnybrook, about this year’s conference. “The sessions gave us a good perspective of our roles and where we fit in along the patient journey.” “From the outpatient rehab point of view, providing care in this setting helps give patients the opportunity to focus on their goals as they transition to the community while being supported by our interprofessional teams who provide them with the necessary tools to prevent re-injury,” says Saporta, who is also a Registered Physiotherapist, and Vice President, Special Projects, CAAC. In tribute to the work of health care professionals in ambulatory care, the CAAC plans to launch Ambulatory Care Awareness Day on October 21, 2015.

Highlights of sessions presented at CAAC conferences:

• Managing non-acute gastrointestinal (GI) bleeds in patients who present at the Emergency Department by using an Upper Gastrointestinal Bleed algorithm that was developed collaboratively between the Emergency Department and the Digestive Diseases Unit (DDU). Patients have access to a gastroenterologist and same day endoscopy. They have a treatment plan formulated and in some cases are safely discharged home in less than 24 hours of arrival. This algorithm has provided safe, effective patient care while decreasing overall length of stay. – Melodie Cannon, DNP, Joy Abbas, RN, Jatinder Bains, Manager, DDU and CPDs, Dr. Jose Nazareno, Gastroenterologist, Medical Director, DDU – Rouge Valley Health System • The Rapid Referral clinic is an interdisciplinary clinic designed to facilitate assessments of general internal medicine patients by an internist outside of the emergency room, to reduce admissions to the inpatient service. Patients with nonacute referring diagnoses are managed in this clinic, which was developed in collaboration with Diagnostic Radiology,

Laboratory Medicine, Nursing and Noninvasive Cardiology. Investigations for these patients take place under the guidance of a nurse, residents and an internist. The clinic opened in 2010. Over four years through March 2014, 3,358 patients were seen, 1,019 avoided hospital admission initially, and 387 eventually needed admission. The rest were managed in the Rapid Referral Clinic or referred to specialty care. -Dr. Graham Slaughter, Internal Medicine – Sunnybrook Health Sciences Centre • Medically Complex Patients (MCP) Demonstration Projects are making improvements in care transitions for patients with multiple, chronic illnesses. One such project, the East/GTA Family Health

Team Transitional Care Pilot has used the expertise of family physicians, nurse practitioners, registered nurses, social workers, pharmacists, occupational therapists, and other allied health professionals, and personal support workers, to address the total needs of over 200 of these patients to date, and are using a standardized care plan and electronic medical records for information-sharing between the different health care providers as patients move between care environments. – Dr. Christopher Jyu, Physician Lead, SuH din Ray, Mplex Project Manager – MCP ■ Natalie Chung Sayers is a Communications Advisor at Sunnybrook Health Sciences Centre.

Leading Science. Leading Practice.

OCTOBER 25  28, 2015 Sheraton Centre Toronto Hotel AUGUST 2015 HOSPITAL NEWS

22 Legal Update

Privacy breaches by hospital employees By Rhonda Shirreff & Sunny Khaira


anadian privacy laws contain a basic safeguarding principle: access to personal information may only be granted on a need-to-know basis. Snooping violates that principle. Several Ontario arbitrators have upheld a “zero tolerance� approach for privacy breaches at hospitals, holding that summary dismissal is the appropriate remedy for deliberate breaches of confidentiality and workplace codes of conduct by hospital employees who snoop into patient records for their own reasons, rather than for any legitimate purpose.

A zero tolerance approach to hospital employee snooping may not be sufficient for hospitals to ward off civil liability for patient privacy breaches.

For example, in North Bay Health Centre v. O.N.A., (2012) 216 LAC (4th) 38, a 12-year employee with a good record was fired for violating patient privacy after she accessed 5,804 individual patient health records and made over 12,000 unauthorized inquiries over a seven-year period. The arbitrator found the sheer volume of the violations warranted dismissal, adding that the employee knew or should have known that her access to patient records was properly limited to those she had a professional obligation to care for. Arbitrators have upheld the zero tolerance approach even when hospital employees’ snooping was much less pervasive. In Bluewater Health and O.N.A. (Hardy) (Re), 2010 CLB 33129, an arbitrator upheld the termination of a part-time nurse

for accessing the medical records of four patients who were not under her care. Although the nurse’s unauthorized access to each patient’s record lasted for only a few seconds, the arbitrator found it difficult to accept that it was accidental. In Timmins & District Hospital and O.N.A. (Peever), (2011) 208 LAC (4d) 43, an arbitrator upheld the termination of a 22-year employee who accessed the clinical mental health records of a patient who was married to her son. The arbitrator rejected the employee’s claim that she was unaware her conduct violated the hospital’s ethics and confidentiality policies. As the employee showed no remorse and there was no assurance that she would not snoop into patient records again, the arbitrator concluded there were no compelling circumstances to mitigate her discharge. Arbitrators will deviate from the zero tolerance approach in the face of compelling mitigating circumstances. For example, Vancouver Coastal Health Authority and HAS BC (Gamache) (Re), (2014) 118 CLAS 104, involved a 24-year employee who was fired after improperly accessing a patient’s medical records and emailing that information to a friend whose sister – unbeknownst to the employee – had recently separated from the patient. The arbitrator found “extremely compelling� circumstances to substitute a three-month unpaid suspension for the termination, including the employee’s strong employment record, her candid and sincere admission of wrongdoing, the fact that her wrongdoing was isolated and out of character, and the stressors in her life at the time, including her husband recently being diagnosed with melanoma and an aging mother with serious medical set-backs. Moreover, a zero tolerance approach to hospital employee snooping may not be sufficient for hospitals to ward off civil liability for patient privacy breaches, as the following case demonstrates. In 2011, the Peterborough Regional Health Centre discovered that a number of


Supply of nurses in Canada declines IRUWKHÂżUVWWLPHLQGHFDGHV



employees, including a supervising nurse, had accessed the personal health information of up to 280 patients without their advance knowledge or consent. Based on media reports, the breach included unauthorized access to the records of a victim of domestic violence who was in hiding, plus unauthorized access to hundreds of therapeutic abortion files by a records clerk who was an anti-abortion activist. The Health Centre took prompt remedial action. It fired the employees involved, conducted a hospital-wide privacy campaign and, as required by the Ontario Personal Health Information Protection Act (PHIPA), notified the affected patients of the privacy breach. The Ontario Information and Privacy Commissioner conducted an investigation. He found that the Health Centre had “responded reasonably� to the privacy breaches and determined that “no further action was warranted� against the Health Centre. Unsatisfied with the outcome of the Commissioner’s investigation, a group of affected patients launched a class action against the Health Centre, seeking over

$5 million in damages for the unauthorized access to their personal health information. In February 2015, the Ontario Court of Appeal held that it was permissible to bring a class proceeding for civil damages against the Health Centre for the unauthorized access to patient records, even though the Commissioner had already conducted an investigation under PHIPA [Hopkins v. Kay, 2015 ONCA 112]. The aftermath of the privacy breaches at the Peterborough Regional Health Centre suggests that hospitals could be liable for significant civil damages, even when they have taken a zero tolerance approach to employees improperly accessing patient records and have responded reasonably under PHIPA. As the class action law suit moves forward, it will serve as an important reminder of the potential ramifications of confidentiality breaches by snoopH ing hospital employees. â– Rhonda Shirreff and Sunny Khaira are Associates in the Employment and Labour Group at Osler, Hoskin & Harcourt LLP in Toronto.

‘House within a hospital’ By Ron Foster

he reaction from families in the Windsor-Essex community was instant and extremely gratifying when they heard that Windsor Regional Hospital (WRH) would be facilitating a Ronald McDonald House to accommodate families requiring overnight stays inside of the hospital. It is a first in Canada to have the concept of a “house within a hospital.� Ronald McDonald House Charities have introduced the model of providing houses inside hospitals in other countries such as the United States and Japan. The existing 14 homes in Canada are free-standing structures. Windsor’s House will be closer to the young patients, inside of Windsor Regional Hospital, only a few steps from the clinical area. Ronald McDonald House Charities Southwestern Ontario (RMHSWO) made the official announcement on May 1, 2015 after developing a business case for the project with Board approval. “We are incredibly excited to be able to support families coming to Windsor Regional Hospital during their time of most critical need,� says Margaret Anderson, Executive Director for RMHSWO. “Approximately 26 per cent of the families we support at our House in London, Ontario come from the Windsor-Essex region. While that number won’t change, we are thrilled to be able to bring the same level of comfort and support right into the Windsor-Essex community.� Windsor Regional Hospital has offered 3,500 square feet of space in a former clinical wing of the facility for the new House. A Steering Committee is now reviewing and determining the room capacity and amenities within the space to facilitate the needs of families such as showers, laundry facilities, kitchen and lounge space to make the area as comfortable as possible. The Ronald McDonald “house within a hospital� is expected to include at least five bedrooms to help keep families


Drew Dilkens, Mayor of the City of Windsor and David Musyj, President and CEO, WRH celebrate the Ronald McDonald House Charities ‘House within a Hospital� project. together through their child’s medical journey. Currently, some individuals and families choose to use WRH’s Bedside Manor homes located at both the Met and Ouellette campuses however, they are frequently occupied. The introduction of a RMH provides a unique opportunity specifically for families of children and newborn patients at Met campus and will allow the Bedside Manor locations to focus on families and loved ones of adult patients. “We are extremely proud to be the first hospital in Canada privileged to house a Ronald McDonald House program that meets the needs of any parent by giving them a comfortable place to rest during very difficult times,� says David Musyj, President and CEO of Windsor Regional Hospital. “Ronald McDonald House is a name synonymous with our mission to provide ‘Outstanding Care – No Exceptions!’ and is a wonderful partnership that will serve families for many years to come.� The Ronald McDonald House Charities across the spectrum offer a “home away from home� for families affected by a seriously ill child. Continued on page 26

Nursing Pulse 23

Profound experiences help RNs to decide what nursing means to them

For five years, the Registered Nurses’ Association of Ontario (RNAO) has been soliciting and publishing personal reflections from its members on the pages of Registered Nurse Journal, the association’s flagship publication. A single page at the back of each issue of the magazine is reserved for nurses to write about a situation or interaction that has helped them to define what it truly means to be a nurse. The following reflections appeared in the January/February and March/April 2015 issues of the magazine. By Mary Michalski

Third-year Bachelor of Science in nursing student, University of Ontario Institute of Technoloy (UOIT) hen I began working as a nursing assistant at a children’s hospice, I felt a sense of pride in managing care for as many patients as possible. I was convinced that the busier I was, the better a nurse I could become. Emmy*, a passionate athlete and artist, was a 14-year-old patient who taught me otherwise. Facing a relapse of cancer, Emmy spent most of her days sleeping. Her family, friends, and staff at the hospice cherished the moments she felt well enough to come out of her room. Coincidentally, Emmy and I discovered we had both attended a camp for children living with cancer the


previous summer. Our passion for camp, and the well-loved memories it provided, served as the foundation for many of our conversations. We longed to be back at camp, feel the heat of a campfire, and experience the freedom of dancing to crazy songs without a care in the world. As such, it came as no surprise to me when Emmy, out of her room on a good day, excitedly accepted my offer to create some traditional camp “bling” together. As we decided what to create, worrying thoughts poked through my consciousness. What if the nurses needed my help? Was this a good use of my time? Could this even be considered nursing? With

By Adam Moore

Emergency department RN, London Health Sciences Centre s a nursing student, I viewed every new placement as an opportunity to test my skills, prove myself, and put my new-found knowledge into practice. I loved working beside experienced nurses. Just days into my first shift in an acute-care setting, I was 23 and ambitious. There was no challenge I could not conquer… at least that’s what I thought. I had yet to experience my first patient loss. On my third day, I was asked to observe a young man undergo a chest tube insertion. This was not common practice, particularly in a patient’s room on a respiratory unit, so I jumped at the opportunity. As the physicians began the procedure, I stood at the foot of the bed talking to the patient about sports and joking about the different teams we liked. As I talked, I noticed he had become silent. I stood frozen as his face became pale and he began to panic. He turned his gaze from me to those performing the insertion before rolling his head back and losing consciousness. The physician asked me to call a “Code Blue” to indicate cardiopulmonary arrest. I stepped out of the room and shouted to the surprise of others who don’t typically see this kind of emergency. Back in the room, a nurse had begun compressions. She turned to me and said: “You’re next. Get ready.” I was in absolute shock. I began repeating in my head everything I had learned, reminding myself “…this is what I prepared for. I can do this.” I took over the resuscitation efforts and felt my heart racing. Alarms were beeping and more people entered the room, each with their own task. Despite the chaos, I began to feel alone and panicked. As sweat began rolling down my face, a resident turned to me, his


voice calm and soothing. He suggested I shift my hands slightly and told me I was doing a great job. In the same moment, a nurse tapped my back in encouragement, and let me know there were others to take over if I needed a break. In that moment, I knew I wasn’t alone. After what felt like hours, the young man was stabilized and escorted to the critical care and trauma centre. His heart stopped multiple times over a one-hour period, and he died. I stayed with him the entire time. It’s been two years since that placement experience and I am now an RN in a busy ER, where these codes occur frequently. I can say with confidence the support I received that day shaped the way I nurse. The reassurance made me feel as though I was no longer just a student on the unit, but an active member of the health-care team. That moment helped me realize why I got into nursing: to confidently care for patients and to encourage others to do the same, ultimately eradicating the stereotype that nurses eat their young. Today, I consistently reassure students and new grads they are doing well, and provide that same positive reinforcement I received. I answer questions and remain calm in times of panic, and in doing so, I hope to have the same positive influence on new nurses as others did on me when I H was starting out. ■ *A pseudonym has been used to protect privacy. The Registered Nurses’ Association of Ontario (RNAO) is the professional association representing registered nurses, nurse practitioners, and nursing students in Ontario. For more information about RNAO, visit

guilt, I pushed these thoughts aside. Something told me Emmy took priority. We decided to create a keychain of her favourite word: fearless. However, her enthusiasm waned as she attempted to grasp the marker we would use to create her masterpiece. “I can’t use my hands,” she whispered, her eyes downcast and sad. “No problem, we’ll do it together,” I suggested. We traced over each letter meticulously, Emmy holding the marker as I guided her hand. She drifted in and out of sleep, occasionally opening her eyes to supervise my work. “That’s not supposed to be coloured in,” she reminded me, and I frantically tried to undo my mistake. After nearly an hour, Emmy’s “bling” was complete; as unique, serene and fearless as the girl who had created it. In nursing school, the gift of time is emphasized as the greatest thing we can share with our patients, yet I had overlooked its significance in my desire to develop practical

skills that I believed would make me a good nurse. The children, families, and nurses I have the privilege of working with each day at the hospice consistently remind me that “making memories out of moments” is what end-of-life nursing is all about. Since this experience, I have learned that the act of being with our patients during their most difficult moments captures the essence of nursing. Thank you Emmy, for teaching me to cherish the time we have, and for shaping me into the nurse I one day hope to H become. ■ *A pseudonym has been used to protect privacy. The Registered Nurses’ Association of Ontario (RNAO) is the professional association representing registered nurses, nurse practitioners, and nursing students in Ontario. For more information about RNAO, visit

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24 Focus


(left) Dr. Adeel Safdar took to sleeping on the floor of the research lab to safeguard the precious samples that are at the core of his research into the biochemistry of mitochondrial disease. (right) Erin in front of Tucker’s Toy Box.

Understanding mitochondrial disease From bedside to bench to bedside By Maureen Latocki

hen the freezers in his research lab were failing, Dr. Adeel Safdar took to sleeping on the floor of the research lab to safeguard the precious samples that are at the core of his research into the biochemistry of mitochondrial disease. The term mitochondrial disease covers a multitude of heterogeneous diseases that are linked clinically and biochemically. There is primary genetic disease and also secondary


mitochondrial disease where there is evidence of mitochondrial dysfunction. These include but are not limited to neurodegenerative, later-onset diseases such as ALS, Alzheimer’s and Parkinson’s disease and even Type 2 diabetes, cancer and heart disease. Presenting symptoms of mitochondrial disease vary widely and may include developmental delays, migraines, seizures, strokes, intermittent weakness, neuropathic pain, gastrointestinal problems, muscle pain, cardiomyopathy, visual or hearing loss, diabetes, fatigue or unexplained vomiting. When three or more organ systems are involved you should think mitochondrial disease. To say Dr. Safdar is passionate about his work is an understatement but he is only one part of an equally committed multi-

disciplinary team at the Corkins/Lammert Family Clinic for Mitochondrial Medicine and Research at Children’s Hospital in Hamilton Ontario. What makes this clinic unique is the research team is also the clinical team therein enabling the patient to be at the centre of every point of care and at the bench when research discoveries are being made. Under the watchful eye of Clinical and Research Director Mark Tarnopolsky MD, PhD, FABEM, FRCPC, Professor and Division Head of Neuromuscular and Neurometabolic Disorders in the Department of Paediatrics at McMaster University, the team sees thousands of patients a year from across Canada and around the world. Delores Reid is the person who keeps the clinic humming while Linda Brandt, RN is the first point of contact with patients as

Dispelling myths about mitochondrial disease these genes have mutated. People with mitochondrial disease receive mutated genes from each parent or a mutated gene from only one parent. Another way a mitochondrial disease can be inherited is, in fact, only MYTH An individual with mitochondrial from the mother. In this type, there disease has mental retardation, growth is a mutation in the mitochondrial problems, and/or seizures. DNA - DNA that exists only in the FACT – Only some individuals have mitochondria. Only mitochondrial these developmental problems. disorders caused by mutations in the Patients’ symptoms can range from mitochondrial DNA are exclusively extremely mild to severe, involve one or inherited from mothers. more body systems, and can emerge MYTH If parents don’t have any at any age. The brain, muscles, heart, liver, nerves, eyes, ears and kidneys are symptoms of a mitochondrial disease, there’s no chance that their children the organs and tissues most affected. can have a mitochondrial disease. Most patients’ symptoms fluctuate FACT – Parents can be ‘genetic carriers’ over the course of their disease at times experiencing no or few symptoms of a mitochondrial disease. This while at other times experiencing many means that each parent has inherited a defective gene but do not show and/or severe symptoms. Even family symptoms of the disease. However, members with the same disorder can ‘carriers’ are able to pass the defective experience vastly different symptoms gene onto their children. MYTH Mitochondrial diseases are MYTH Since mitochondrial disease is inherited only from your mother. incurable, no treatments can be given FACT – Not true. There are several to these patients. ways mitochondrial diseases can be inherited. Under normal circumstances, FACT – Even though these disorders are chronic and incurable, treatments a person’s ‘blueprint’ -- the DNA in our are available. Early treatment of genes that makes each of us unique, symptoms can reduce symptoms comes from both our mother and our or slow progression of the disease. father. In mitochondrial diseases, Certain supplements may improve MYTH Mitochondrial disease is a childhood disease. FACT – Although mitochondrial disorders are commonly seen in infants and children, they can occur at any age.


mitochondrial disease-related symptoms. MYTH A muscle biopsy is the “gold standard” for diagnosis of mitochondrial disease. FACT – Although the muscle biopsy is a powerful diagnostic tool, it is not the only option. A biopsy examination includes microscopic evaluation, enzyme testing, and genetic testing. In some patients, the diagnosis can be made based on clinical symptoms and a positive blood test (identifying a genetic mutation) or a combination of clinical findings and other non-invasive testing. In either case, a muscle biopsy is not necessary. Finally, since biopsy results usually do not alter the long-term outcome or treatment considerations, some specialists and patients choose to treat without the need for a muscle biopsy. MYTH Over-the-counter nutritional supplements offer the only protection for our mitochondria. FACT – Beside nutrient support, there is exciting early evidence that exercise may have a role in repairing malfunctioning mitochondria. The potential to restore or preserve mitochondrial health holds great promise for treating mitochondrial disease in the future.

well as overseeing the Inherited Metabolic Diseases (IMD) Program for her Ontario patients. The program covers the full cost of certain outpatient drugs, supplements and specialty foods used to treat metabolic disorders including mitochondrial disease. The “mito cocktail” is a prescribed concoction of antioxidants including beta carotene and vitamins C and E that have been shown to have an oxidative protective effect in neurodegenerative disease. Other therapies believed to improve mitochondrial function include creatine, coenzyme Q10 and idebenone. When the expertise of a genetic counsellor is required, Lauren Brady is called into action. She too is involved in research with her particular interest being in the use of new genetic testing technology to identify the primary causes of an individual’s previously undiagnosed neuromuscular or mitochondrial disease. The advent of new genetic tests such as whole exome sequencing has greatly improved the opportunity for a cost-effective way of identifying genetic mutations associated with mitochondrial disease. Both Kristin Frescura and Erin Hatcher are the clinic’s exercise testing technicians. Kristin’s research focus is on how regular exercise can improve the quality of life of those suffering from mitochondrial disease and slow the progression of the disease. She is currently working on the NAMDC (North American Mitochondrial Disease Consortium) Study that includes a patient registry and biorepository. Erin, on the other hand, coordinates the clinic’s clinical research activities and is working on several studies, including antioxidant therapies for Friedreich’s Ataxia, exercise as a countermeasure for ageing, and sialic acid therapies for patients with Hereditary Inclusion Body Myopathy. According to Erin “We’ve lost some very beloved patients, and through the sadness has come great motivation to work towards the best treatments possible.” Today young patients who visit the clinic are treated to Tucker’s Toy Box which is a labour of love for Erin and a lasting tribute to a very special patient Tucker Patterson who succumbed to mitochondrial disease H in 2010. ■ Maureen Latocki is the National Executive Director at MitoCanada Foundation.

Focus 25


More than just picky eating By Suzanne Gold and Adrienne Vienneau essie is a five-year-old girl who doesn’t like foods with much texture or flavour. She prefers to eat foods that don’t require lots of chewing, like soup, pasta, or oatmeal. Jessie has difficulty eating a range of foods and her mother struggles daily with getting her to consume the nutrients she needs to grow and thrive. Jessie is the smallest child in her class and has been severely underweight for two years.


Avoidant/Restrictive Food Intake Disorder is described as substantial restrictions or challenges with food intake, associated with weight loss or lack of expected weight gain in the context of significant physiological and/or psychosocial distress. Jason is a 10-year-old boy who was not a picky eater at all, until he nearly choked on a hot dog eight months ago. The hot dog dislodged and he did not require medical attention immediately after the incident; however, since that day Jason has been reluctant to eat out of fear of choking. He refuses most foods most of the time, but occasionally accepts milk, yogurt and soft cheeses. He has not gained weight since the incident, and with puberty looming ahead, his parents are growing more concerned by the day. ARFID – Fast Facts: • ARFID is typically associated with other medical and psychiatric conditions, often including gastrointestinal conditions like inflammatory bowel disease, as well as anxiety disorders. • The average time to diagnosis is 33 months. • A higher proportion of diagnoses are made in boys than in anorexia nervosa; however, like most eating disorders, ARFID is more common in girls overall (70 per cent girls vs. 30 per cent boys). • Without treatment, ARFID can cause a wide range of complications, including nutritional problems like iron-deficiency anaemia and low bone-mineral density; delayed pubertal development; and problems with overall growth and development. • Treatment protocols are still being developed, but current treatment includes outpatient family counselling, as well as exposure therapy, in which new foods are slowly and carefully introduced to the child, with appropriate supports in place. • About 13 per cent of the patients seen in paediatric tertiary-care centres with eating disorders programs, like SickKids, are now diagnosed with ARFID.

For years, doctors did not have the necessary tools to diagnose children like Jessie and Jason. Did they have “traditional” eating disorders like anorexia nervosa? No, because they did not have distorted body image or a desire to lose weight. In May 2013, a new category of eating disorder emerged in the Diagnostic and Statistical Manual of Mental Disorders, 5th edition (DSM-5), a psychiatric classification and diagnostic tool used across North America. Now, two years later, a new commentary by experts from The Hospital for Sick Children (SickKids) and the Children’s Hospital of Eastern Ontario (CHEO) reflects on the clinical impact of the diagnosis of Avoidant/Restrictive Food Intake Disorder (ARFID), and the work that remains in terms of treatments and improved outcomes. The commentary is published in the June 18 online edition of the Journal of Adolescent Health. The classification of ARFID expanded upon a previous diagnostic category of Feeding Disorder of Infancy or Early Childhood, which was rarely used or studied. ARFID is described as substantial restrictions or challenges with food intake, associated with weight loss or lack of expected weight gain in the context of significant physiological and/or psychosocial distress. Drs. Katzman and Norris have led or participated in a variety of studies on the diagnosis since its introduction and are planning future studies in the area as well. “ARFID is not just about picky eating – it’s a very challenging diagnostic category in the DSM-5,” says coauthor Dr. Debra Katzman, a Staff Physician in the Eating Disorders program and Senior Associate Scientist at SickKids. “These kids have complexity, and this condition persists for long periods of time and requires treatment to address both the medical and psychosocial aspects of the condition. If left untreated, children and teens may be left with serious, long-term complications.” In addition to the physiological impairments caused by the disorder, there are serious social implications, especially for teens, whose social interactions are often centred around food. “For those teens who are unable to go out to eat pizza with their friends, the condition can be socially limiting,” says Katzman, who is also Professor of Paediatrics at the University of Toronto. “Parents have a significant role in identifying unhealthy patterns in their child,” says coauthor Dr. Mark Norris, Adolescent

Health Physician and Associate Professor of Paediatrics within the Department of Paediatrics at CHEO. “Concerned parents should talk to their child’s paediatrician or family doctor early on, rather than letting the problem persist for months or even years.” It is also critical, he explains, that clinicians on the front-lines and in eating disorders programs alike become more familiar with the diagnosis, so that the depth and range of eating difficulties among children, teens and adults can be further studied. In tandem, eating disorders specialists are working to assess outcomes

and evaluate the effectiveness of different interventions. This paper is an example of how SickKids and CHEO are contributing to making Ontario Healthier, Wealthier and Smarter. www.healthierwealthiersH ■ Suzanne Gold is a Senior Communications Specialist in Media Relations at SickKids in Toronto and Adrienne Vienneau is Director, Communications & Public Relations at the CHEO Research Institute in Ottawa.

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26 Health Care Technology

Solving the relief shift dilemma By Keri Fraser

ospitals and clinics have long been plagued with the challenge of last minute relief shift replacement. The dangerous implications of failure to fill shifts can be illustrated in one of the daily dramas that unfold in the ER. An elderly man is admitted to the ER for chest pain. He may be overreacting to a case of bad acid reflux- but he could also be experiencing the symptoms of an impending heart attack. Unfortunately, an ER nurse called in sick at 5pm for her shift at 7pm and no relief nurse was found – so the elderly man waits, and every second of waiting is a direct result of the short staffed ER – that could be seconds too many if the man goes into cardiac arrest. If the relief shift had been filled faster, the outcome of this man’s ER visit could be much different. When a nurse or staff member calls in sick, hospital units are at risk of being understaffed until a replacement nurse or staff member can be found to fill the shift. Many of us are familiar with this scenario when a nurse calls in sick just a few hours before they are scheduled to be on a ward. A scheduling agent then scrambles to fill the shift using complex scheduling software to create a list that adheres to collective bargaining agreement rules as well as seniority, priority and skill sets of nurses that could potentially fill the shift. Then the phone calls begin. Scheduling agents currently must place a phone call to each eligible relief pool nurse in order of seniority making sequential phone calls one by one. Only when a “live” connection is made can an offer of a vacant shift be made to the relief nurse, otherwise messages are left and the scheduling agent moves on to the next relief pool nurse on the seniority list. Time is quickly passing as the ward prepares to be short staffed without a nurse to fill the shift. Only after working through the list



The automated calls are quick and intelligent, asking staff to confirm their acceptance of full or partial shifts and updating all information in a secure portal. Staff members can select their preferred mode of contact, whether it is mobile phone, text, or email, in a secure web portal. and connecting with a relief nurse who accepts the shift can the scheduling software be updated and the unit manager alerted of the replacement. This manual, sequential phone based process has long created some challenges for hospitals and clinics in both internal process and on the patient facing-side in an effort to ensure that patients are not at risk due to short staffing. Just a few of the challenges we face: • Sometimes shifts don’t get filled before the shift starts – this leaves units short staffed and ultimately can put patient safety at risk • Wait times increase as fewer staff means fewer patients seen in a timely fashion • Nurses at times grieve the relief shift process when they believe a shift has been improperly awarded or that they had not been given adequate notice • The largely manual process is expensive to maintain. Island Health puts patient safety and care first, and therefore sought out an innovative solution to address this manual process using an automated, interactive

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voice, email, and text solution. Their vision was to streamline communications, reduce costs associated with tying up valuable time to make individual phone calls, and reach more candidate relief staff more quickly in order to fill shifts due to shortnotice unplanned absence . By integrating the existing staff scheduling software at Island Health with an interactive voice solution, ultimately relief shift calls could be automated and performed without delay. When scheduling agents are notified that a nurse or staff member will not be able to attend a shift, the agent will use the existing staff scheduling software to create an eligibility list based on seniority and collective bargaining rules. This relief pool list will be sent to the Auto Shift Callout Software and in real time, calls will be initiated to multiple nurses simultaneously along with a guaranteed minimum response time window. All calls will be tracked and documented with interactive responses recorded immediately. Once all relief pool staff have been contacted and the response time window has elapsed, the scheduling agent will then review the expressions of interest from responders, determine the successful nurse responder based on rules that apply to the position including seniority, send a message of award to that nurse, then record that the nurse has been awarded the shift in the staff scheduling software.

The automated calls are quick and intelligent, asking staff to confirm their acceptance of full or partial shifts and updating all information in a secure portal. Staff members can select their preferred mode of contact, whether it is mobile phone, text, or email, in a secure web portal. The system recommends shift award based on collective bargaining agreements and Island Health’s business rules using preconfigured criteria embedded in Kronos’ Workforce ESP. Now with the new auto relief shift call out solution: • Shifts can be filled more quickly, with the automated calls happening within minutes of the relief shift pool list being created. Reducing the likelihood of Units being short staffed, and patient care will remain a top priority. • The software will track every call made with time and date stamp. Grievances will be minimalized as the software follows every collective bargaining rule embedded in the existing staff scheduling software. This is a significant cost savings as grievances often result in financial penalties. • The new process will reduce manual calls, and therefore reduce the time that scheduling agents need to spend filling shifts due to short-notice unplanned absence. Agents can therefore be deployed to work on higher value projects and finding relief for future unfilled shifts rather than short-notice relief shift calls. “Island Health is committed to the delivery of outstanding patient and client care. The combined Vocantas and Kronos technology we are deploying will play a critical role going forward in raising the level of care we can deliver as we eliminate delays in filling shifts,” says Shawn Robinson, Director Staff Scheduling, Vancouver Island Health Authority. “Now, calls to staff will be automated and performed concurrently, allowing us to connect with large pools of staff in just minutes. In the past, we manually called staff in a sequential format to try to fill relief shifts. The efficiencies created by this combined technology will ensure facilities have the right staff at the right time to deliver the outstanding H care we are committed to.” ■ Keri Fraser is the VP of Marketing and Business Development, Vocantas.

‘House within a hospital’ Continued from page 22

The facilities offer a comforting atmosphere, nourishment and rest, often needed by parents. Families do not focus on themselves when their child is sick; their concern is on their child only. “It’s very overwhelming to have a sick child that needs so much care,” explains Jason Dunn, whose son was in hospital for several months after birth. “You don’t want to leave but you know you have to because you have to sleep. At the end of the day, you’re leaving your sick child in a bed and it rips your heart apart.” The House will provide families that time they need to reenergize, so that they can continue to be there for their child. Volunteers, donors and suppliers will assist with the operations of the House on a daily basis. Ronald McDonald House Charities

Southwestern Ontario’s Vision is “Giving sick children what they need most… their families” and their Mission, “To provide comforting and supportive services and programs for families of seriously ill children who require medical care.” With those statements, the Windsor-Essex community is assured that the House, planned to open in the spring of 2016, will be just what the doctor ordered. For further information contact the London, Ontario Ronald McDonald House Charities Southwestern Ontario office at or H 519-685-3232. ■ Ron Foster is Vice President, Public Affairs, Communications and Philanthropy for Windsor Regional Hospital.

Health Care Technology 27

Canada’s largest health platform opens to researchers By Tanya Flanagan


anada stepped onto the international stage this year, launching this country’s largest population health research platform that includes data from 300,000 Canadians. This means that nearly one in every 50 individuals between the ages of 35-69 have selflessly volunteered to share their health and lifestyle information over their adult lives. The Canadian Partnership for Tomorrow Project (CPTP) is one of a handful of prospective population cohorts with global significance, offering researchers around the world a powerful resource to investigate the causes of cancer and chronic diseases. The Canadian Partnership Against Cancer connected scientific leaders from across Canada and has helped form, fund or facilitate work with regional cohort studies that reflect Canada’s diverse geography and population. The CPTP regional studies are: BC Generations Project, Alberta’s Tomorrow Project, the Ontario Health Study, Quebec’s CARTaGENE project and the Atlantic PATH. The benefits of this joint effort are many. Cohort studies have shown us the links between smoking and lung cancer, and between heart disease and high cholesterol. For decades, cancer research has largely been conducted by researchers focusing on a single factor, using a retrospective approach. While this has led to a wide body of research, the diversity of study samples and the small size of many studies has sometimes made it difficult to gain a deep understanding of the causes of disease. It also means study participants need to recall behaviours from many years ago before the disease developed, which is difficult to do with the required accuracy. The combination of the prospective approach used by CPTP, the size of the cohort and the depth of its information has the potential to save researchers time by not having to create a new cohort and to greatly improve their ability to look at multiple factors. CPTP participants have completed a comprehensive health and lifestyle questionnaire, resulting in data on more than 700 variables for researchers to access. Many participants have also contributed bio-samples, including nearly 132,000 venous blood samples that can be used for multiple research avenues. CPTP has also collected 100,000 urine samples and 30,000 toenail clippings, which can be used to study body metabolites and exposure to environmental toxins respectively. To supplement the core questionnaire data, up to 90,000 participants also contributed additional physical measurements such as blood pressure, body fat composition and lung function. The breadth of this unique longitudinal database (or data set) will allow researchers to gain a better understanding of diseases like cancer that take many years to develop. The combined power of health and lifestyle information, bio-samples and the potential to re-contact participants will enable researchers to explore links between factors such as an individual’s health,

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style history, exposure to environmental toxins, and genetic makeup with the risk of onset of cancer and chronic diseases. The data could also help shed new light on the factors that contribute to regional disparities in cancer and chronic disease rates. And because participant data can be linked to administrative health records, researchers will also be able to study other health outcomes not captured in CPTP which will provide important information on the effectiveness of policies and practices intended to improve disease prevention and management. Over time, the value of the research platform will continue to increase. CPTP will follow participants for 20 to 30 years, with the potential to collect additional data. As study participants age, some may develop diseases such as cancer or heart disease. Researchers can then look back at their health data to search for factors that are linked to disease onset.

The Canadian Partnership Against Cancer connected scientific leaders from across Canada and has helped form, fund or facilitate work with regional cohort studies that reflect Canada’s diverse geography and population. CPTP data have been collected in a way that will facilitate use by researchers worldwide and when combined with data from other cohorts, will allow researchers to conduct international research and will increase the size of the dataset and statistical power. CPTP has compiled, harmonized and formatted the data to deliver a comprehensive collection that can be accessed by researchers through an easy-to-use request process. Health, lifestyle, environment and behaviour data from two-thirds of participants are currently in the database and in the coming years, data from more participants and additional information will be added and access to bio-samples will be put in place. These activities combined with re-contact and linkage to administrative health records will enable CPTP to continue to grow. With such potential, CPTP provides hope of new discoveries that will improve the health of all Canadians – now and into the future. Let the research begin. For more information, go to www.partH ■ Tanya Flanagan is Manager, National Infrastructure with the Canadian Partnership for Tomorrow Project, a key initiative of the Canadian Partnership Against Cancer. The Partnership works with Canada’s cancer community to reduce the burden of cancer on Canadians.

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Hospital News 2015 August Edition  

Focus: Pediatrics, Ambulatory Care, Neurology, & Hospital-based Social Work.

Hospital News 2015 August Edition  

Focus: Pediatrics, Ambulatory Care, Neurology, & Hospital-based Social Work.