CANet - On Track: Syncope

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Syncope SPRING 2018 - ISSUE I

YNCOPE Syncope is a transient loss of consciousness, described as fainting or passing out. It usually relates to a temporary insufficient flow of blood to the brain. Syncope is a common condition, which can occur at any age and in people without other medical problems.

Neurally mediated syncope (NMS), the most frequent cause of fainting, is benign.

It is most common in children or young adults but can occur at any age. If this type of syncope is prolonged, it can trigger a seizure.

Cardiac syncope is caused by a heart or blood vessel condition that affects blood flow to the brain. These conditions can include arrhythmia, structural heart disease, blockages in the cardiac blood vessels, valve disease, aortic stenosis, blood clot, or heart failure.

A challenge with syncope is to accurately identify low-risk syncope patients in the emergency department avoiding hospitalization, better still, having paramedics identify these patients and avoid going to the hospital altogether.

Cover Artwork Jennifer Fairman Fairman Studios

In This Issue CANet-funded project reduces long and costly hospital visits for low-risk syncope patients The Canadian Syncope Risk Score Empowering arrhythmia patients to break down barriers and drive forward Patients play a critical role in developing novel syncope treatments

Cardiac Arrhythmia Network of Canada The Cardiac Arrhythmia Network of Canada (CANet) is a not-for-profit organization dedicated to transforming Canada’s arrhythmia health care system through integrated trans-disciplinary research and development. The network’s strategy is to invent, prove, and implement innovative solutions to enable patients to take ownership and co-manage their arrhythmia health.

CANet is funded by the federal government’s Networks of Centres of Excellence (NCE), Canada’s flagship science and technology program.

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CANet-funded project reduces long and costly hospital visits for low-risk syncope patients Imagine a room full of syncope patients, CANet investigators, medical doctors, clinicians, and paramedics – all talking to one another, and sharing their experiences.

Eventually, the group develops a costeffective, efficient, and consistently high-standard service of health-care that improves the lives of syncope patients and lessens the burden on Canada’s health care system, its doctors, and its paramedics.

Satish Raj has turned this idea into a reality.

Raj, a CANet Investigator and professor at University of Calgary’s Faculty of Medicine, received CANet’s Strategic Research Grant totaling $1,389,476, for his project, ‘Community Alternatives for Syncope Management in the Emergency Room (CASMER)’.

Raj and his team continue to conduct a series of interviews and surveys with low-risk syncope patients to better understand syncope health services in Canada from the patient’s perspective.

"The current standard of care is rarely focused on the perspective and needs of the patient – why do they call paramedics, what they expect of physicians, or what they expect from the treatment,” Raj says.

The project has also utilized the resources of CANet’s Patient Engagement and Empowerment team.

Ian Blanchard, Research Lead and Ryan Lee, Advanced Care Paramedic Alberta Health Services Emergency Medical Services "Most patients with low-risk syncope have excellent outcomes because the diagnoses – vasovagal syncope and initial orthostatic hypotension – are non-life threatening and thus, do not merit a trip to the hospital,” Raj says.

Both, however, are continually recurring features of low-risk syncope, and alarm patients to such a degree that it often prompts visits to emergency departments where tests and costs rapidly escalate.

Studies estimate about a hundred thousand visits yearly to the emergency room. Barely a quarter of those is actually admitted – about 0.1% of those benefits from CT scans, head MRI, EEG, or ultrasounds.

CASMER will reduce syncope‐related health services expenses in Canada by an effectual 30 percent – one of CANet's critical goals.

According to Gerald Lazarenko, the medical director for EMS (Calgary Zone), Alberta Health Services, EMS in Calgary transports approximately 2000 syncope patients a year to emergency departments.

“Most of them could stay at home safely,” he says. “Paramedics are unable to look after more serious cases like heart attacks if they are looking after low-risk syncope patients,” adds Raj.

I am committed to this project because I would hope no one faces these issues quite as bereft of voice and support as I have experienced Lazarenko, working with CANet and Raj developed simple checklists for paramedics that will help them decide whether syncope patients are lowrisk or not. If they are low-risk, the patients could be treated and released immediately. The severe cases would be transported to a hospital.

Extensive training modules have been created, and paramedics at Alberta Health Services Emergency Medical Services are being trained on the checklists which are scheduled for use in the field this June.

Apart from syncope patients, the team is also working with investigators, doctors, and paramedics to develop

patient support groups and websites to provide people with high-quality, unbiased information regarding syncope.

This will not only help patients manage their health – another CANet target but also prevent fruitless visits to the emergency department.

“I have experienced the frustrations of the potentially life-threatening uncertainty of the next syncopal spell, and the desperate need for high-quality and trusted information,” says Dr. Mary Runte, Chair of the CASMER Patient/ Family Leadership Council, lead of the CANet Patient Advisory Council and the CASMER Program Patient Lead. “My experience as a syncope patient, and as a mother of a small child with syncope, is that there are few resources available to help manage or understand the effects of syncope.

Runte is confident that this project will go a long way to start addressing many of these issues. “I am committed to this project because I would hope no one faces these issues quite as bereft of voice and support as I have experienced,” she says.

The CANet CASMER project is working with the global non-profit organization,

Syncope Trust & Reflex Anoxic Seizures (STARS), to develop a website as a support platform for patients, clinicians, and investigators.

“This online platform will help investigators understand the patient journey, design patient‐appropriate interventions, test them on a community‐ wide basis, and learn how they are accepted,” Raj says.

CASMER trainees have been paired with project mentors like Raj and Runte, and participate in relevant CANet training initiatives, including the CANet Annual Scientific Conference.

The founder of STARS, Trudie Lobban, lost her husband to sudden cardiac arrest following a fainting spell.

In her role as the founder of STARS, she has engaged with almost a hundred thousand syncope patients over more than 20 years.

Lobban herself is a syncope patient and a mother with a child with syncope. Like Runte, she is providing invaluable patient perspective for CANet and CASMER. The CANet-funded CASMER project is training the next generation of syncope researchers in Canada – this work will help CANet reach its five-year goal of launching 30-40 new experts in public and private research.

Meet Dr. Satish Raj Satish R Raj MD MSCI FRCPC grew up in Toronto and graduated from Queen’s University Faculty of Medicine. He then completed residency training in Internal Medicine & Cardiology at Queen’s University, and then a Cardiac Arrhythmia fellowship at the University of Calgary.

His primary research interests are to understand the causes of and find more effective treatments for, postural tachycardia syndrome, vasovagal syncope, and orthostatic hypotension.

The Canadian Syncope Risk Score (CSRS) There is an estimated 140,000 syncope patients who visit Canadian Emergency Departments (EDs). Through the use of risk stratification tools, there will be an improvement in patient satisfaction (lesser burden due to long wait times and hospitalization). The proposed strategies would save the healthcare system approximately $70M per year.

Led by CANet Investigator Dr. Venkatesh Thiruganasambandamoorthy, the CSRS is now being implemented in 16 clinical practice sites across 4 provinces.

The overall objective of the CSRS is to optimize the management of syncope patients by providing accurate Emergency Department (ED) risk-stratification for early disposition of the very-low and low-risk patients. As well as, out-of-hospital monitoring for those at risk for arrhythmia and inversion of the very low-risk patients to the ‘Rapid Referral Syncope Clinics’ at the community level by Emergency Medical Services (EMS).

Clinicians can search the CSRS to calculate the patient’s score electronically. It provides more information on when

to use, why it should be used, and the estimated risk of serious adverse events associated with each score.

The CSRS tool: • will enhance identification of low-risk syncope patients for early discharge and reduce unnecessary admissions; additionally, those who are at high risk will be accurately identified for further management.

• can be accessed on the MDCalc website and app that is currently used in 196 countries with 1 million monthly users.

• is currently accessible on the Calculate by QxMD app, a similar platform that has over 400 medical decision support tools encompassing all specialties The implementation activities include the development of guidelines and educational material for emergency department physicians as well as engaging hospital administrators and provincial policy representatives.

Empowering arrhythmia patients to take charge and break down barriers Sometimes, all it takes to make a difference is a handshake, a smile and the words ‘tell me about yourself.’

Mary Runte is reaching out to arrhythmia patients – including families and support groups – to document and share their experiences of living and dealing with the illness.

Runte, a CANet Investigator, Chair of the CANet Patient Advisory Committee, and professor at University of Lethbridge’s Faculty of Management. She recently received CANet’s dedicated Social Sciences Grant totaling $240,000, for her project, ‘Mapping the Arrhythmia Patient Journey’ which documents the social, emotional and psychological impact of arrhythmia in patients.

Importantly, it extends CANet’s objective to put patients on the forefront and empowering them to manage their conditions while providing them with a sustainable health system.

Patients are really thirsty regarding getting information about their conditions.

Runte is an arrhythmia patient herself.

This research will provide Canada with its first in-depth and comprehensive record of the patient experience of arrhythmia through the perspective of the patients themselves, such as the economic, social, and psychological impacts of the illness.

Using this information, doctors will be able to design more efficient, effective and holistic interventions that will take into account patient priorities.

"Real world measures are important when real-life problems

are being investigated,” Runte says.

Tamara Williamson, a CANet trainee, involved with the health psychology part of the project, agrees.

Her father, who suffers from syncope, has fainted several times in his life.

"It is a very scary moment when the ambulance comes to the house and takes a family member away,” Williamson says, adding, “You don’t know if it is a fainting spell or something more serious like a heart attack.”

Patients like Williamson’s father are often on alert for signs of recurrence, and regularly suffer from significant emotional, and psychological distress.

As someone with direct experience of how arrhythmic conditions affect a patient’s quality of life, Williamson is eager to put her training to good use and improve patient outcomes through this work.

For example, she has created a webinar series for future trainees involved in syncope research.

Runte will lead an interdisciplinary team of experts in medicine, policy, economics, and psychology.

"Different disciplines offer different perspectives,” she says.

She and her team will ask the participants – arrhythmia patients and their family members, and support groups – to share their narratives and stories of their illness.

"This will give us a broader understanding of the complexity and diversity of experiences,” Runte says.

For example, the symptoms of arrhythmia are often brief and vary from day-to-day. Patients have a difficult time articulating their symptoms. They fear being dismissed or not believed by physicians and caretakers and are thus hesitant about going to a doctor.

Instead, patients choose to suffer in silence.

Runte is also keen on describing the experience of patients and documenting their lives between their interactions with the medical system.

"Life goes on between doctor appointments," she says.

"There is a great need to collect data outside the context of a physician’s office," Runte says.

Through their feedback, Runte and her team will be able to examine essential aspects of an arrhythmia patient’s life that have not been studied before; one crucial such thing – employment, which is often permanently affected by arrhythmia.

Kelly-Williams Whitt, project co-lead and long-time colleague of Runte, will specifically examine how syncope patients cope with their conditions in the workplace.

"Patients often have multiple syncope episodes and thus, have to take frequent time off from work,” Whitt says. "This can often create difficulties between them and their employers."

By speaking with syncope patients about their workplace experiences, Whitt will be able to learn how they overcome such challenges and face it.

"Their experiences will be critical in giving us directions and guidance for other syncope patients and their employers," she says.

Using the information from these interviews, Runte and her team will develop a survey to help patients identify and prioritize social, psychological, and economic factors that are most impacted by their illnesses.

Doctors, who are often unaware of arrhythmia’s effect on a patient’s employment situation, family responsibilities, and lifestyle choices, can refer to this information to design interventions around them.

Runte will eventually extend this CANet research, currently based in southwest Ontario, all across Canada.

“I want to document the similarities and differences in the cardiac care experience of Canadians across different provinces and territories," Runte says.

Runte’s research builds on CANet’s previous interdisciplinary research across atrial fibrillation (AF), sudden cardiac death (SCD) and syncope in Canada.

Patient expertise is fundamental to an understanding of the patient experience.

The work will train at least five Highly Qualified Personnel (HQP), and expose them to the multidisciplinary CHAT (CANet HQP Association for Trainees) program, keeping in mind CANet’s goal to train the next generation of researchers in patient engagement and partnership.

Runte is working with five patient-partners – people currently suffering from various arrhythmic conditions – who will share their experiences and expertise with the team and will also help in recruiting patients.

One of them, Paul Mercer, is an SCD survivor. The mortality rate of SCD is 95 percent.

"I was one of the five percent who survived," Mercer says.

He is keen on sharing his experiences with the research group and also reaching out to others.

"Patients are really thirsty regarding getting information about their conditions," he says.

"This project will be patient co-led through all phases," Runte says, adding, “Patient expertise is fundamental to an understanding of the patient experience."

Thanks to CANet’s funding for this groundbreaking project that combines social sciences and the medical profession, the patient voice in arrhythmia research is being heard more strongly than ever before.

By mapping the arrhythmia journey together, Runte, her team and arrhythmia patients are building a better road ahead.

The patient's voice What motivated me to get involved with CANet was how having a patient-centred focus changes the perspective on how research projects are completed and how treatment is given.

Paul Mercer, CANet Patient Co-Lead, Mapping The Arrhythmia Patient Journey

What drives us is patient involvement. It's a complete eye-opener and the experience has been overwhelmingly positive.

The answers to these questions are critical in shaping and defining the way Sheldon and his teams conduct clinical trials of Atomoxetine, and increase the chances of a successful trial.

Atomoxetine is an experimental drug projected to reduce the occurrence and suffering of syncope in Canada, decrease emergency room visit and empower patients to manage their care.

Dr. Robert Sheldon, CANet Syncope Track Captain

Patients play a critical role in developing novel syncope treatments Syncope research pioneer Dr. Robert Sheldon has teamed up with patients across Canada to produce cutting-edge treatments through the execution of a first-in-world trial.

Sheldon, a CANet Investigator, and professor at University of Calgary’s Faculty of Medicine received a CANet Strategic Research Grant totaling $249,929 for his project, 'Assessment of Norepinephrine Transport Inhibition to Prevent Recurrent Vasovagal Syncope.’

The CANet-funded project has helped doctors and researchers answer critical yet often over-looked questions such as – what is the acceptable threshold of side effects and discomfort for patients in exchange for them taking drugs for the treatment of syncope? How often and when are patients willing to take pills?

Currently, there are no proven medical treatments for syncope.

"We have to make it worthwhile for them to take the drug," Sheldon says.

Syncope affects around 50 percent of Canadians every year.

People suffer from decreased quality of life, trauma, and loss of employment.

"What drives us is patient involvement," Sheldon says.

"It is a complete eye-opener and the experience has been overwhelmingly positive" The project has used the information gained from patientsurveys and the trial itself to create educational websites and decision-aids for patients and physicians dealing with syncope.

Sheldon and his team are collaborating with the global nonprofit organization, Syncope Trust & Reflex Anoxic Seizures (STARS), to develop these critical resources.

"CANet has played an important role in advancing syncope research in Canada," he says. "CANet organized a 'patient day’ at Alberta Health Services long before this study. At that event, patients shared with us what was essential for them, and what their priorities were."

Those inputs, according to Sheldon, have guided and driven forward CANet’s commitment to engage and empower patients, and together with them, revolutionize syncope research in Canada.

"When you hear what’s important to patients and when you figure out how to address it successfully, that is an amazing feeling," Sheldon says.

Join us in our goal of improving heart rhythm health Learn more about how you can get involved with the Cardiac Arrhythmia Network of Canada (CANet) by visiting www.canet-nce.ca or by emailing getinvolved@canet-nce.ca.

Patients

Investigators

Trainees

We believe that patients should play a key role in developing research agendas and conducting research and the Network involves patients in all aspects of decisionmaking, operations, and participation in research programs.

We bring together Canada’s globally recognized experts in a wide array of related disciplines to share ideas and advance the field of arrhythmia research and treatment.

We provide valuable resources and opportunities for our trainees to network with like-minded colleagues as well as, participate in events and competitions across Canada that help strengthen their research and career development.

SYNCOPE: Quick Facts • Syncope is a common cause of emergency visits in Canada • Over 140,000 Canadians with syncope visit the emergency department annually • 10-20 % of syncope patients will be admitted to hospital for observation and investigation accounting for $127M per year in health care costs • More than 90% of syncope patients are at low-risk of major adverse outcomes

The Cardiac Arrhythmia Network of Canada (CANet) is a not-for-profit organization dedicated to transforming Canada’s arrhythmia health care system through integrated trans-disciplinary research and development. The network’s strategy is to invent, prove, and implement innovative solutions to enable patients to take ownership and co-manage their arrhythmia health.

CANet is funded by the federal government’s Networks of Centres of Excellence (NCE), Canada’s flagship science and technology program.

Cardiac Arrhythmia Network of Canada 1465 Richmond St., Suite 3105 London, Ontario N6G 2M1 519-661-2111 x80011 info@canet-nce.ca www.canet-nce.ca