CANet - On Track: Sudden Cardiac Death

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Sudden Cardiac Death

This publication is presented by the Cardiac Arrhythmia Network of Canada (CANet)

WINTER 2018 - ISSUE 2

udden Cardiac Death Sudden Cardiac Death (SCD) happens when the heart unexpectedly stops working. SCD is usually caused by an abnormal heart rhythm (arrhythmia). When a person experiences SCD, he or she collapses, is unresponsive to touch or sound and usually stops breathing.

SCD victims will die if they don’t receive emergency medical help. An Automated External Defibrillator (AED) must be used to restart the heart.

Up to 40,000 cardiac arrests happen in Canada each year. Your heart has a natural pacemaker, called the sinus node, which creates electrical impulses that cause your heart to beat. When there is a disorder in this electrical system, an arrhythmia may occur.

Cover Artwork Jennifer Fairman Fairman Studios

In This Issue Help is closer than you think: CANet project brings cutting-edge healthcare nearer to patients Combining genetic counselling with clinical assessments to tackle Sudden Cardiac Death C-SPAN project builds Canada’s first detailed database of Sudden Cardiac Arrest cases SADS partnership putting a smile on patient's faces

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

Media Inquiries Fabian Folias Director, Digital Marketing and Communications media@canet-nce.ca 519-661-2111 x81353

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Help is closer than you think: CANet project brings cutting-edge healthcare nearer to patients Dr. Ratika Parkash is getting closer to 120,000 patients across Canada.

Parkash’s work is aimed at patients who live with pacemakers or implantable defibrillators – both, cardiac implantable electronic devices or CIEDs. Pacemakers help control abnormal heart rhythm. Implantable defibrillators deliver life-saving shocks to patients who are at risk of irregular and potentially fatal heart rhythms.

“We want to deliver more efficient pacemaker and implantable cardiac device care across Canada, virtually eliminating in-clinic visits for most patients,” Parkash says.

CIEDs, like any other devices, need regular maintenance in order to function properly and detect atrial fibrillation and ventricular arrhythmia more effectively.

The main factors that will contribute to the success of this program are ongoing collaborations within CANet, and developing technologies that will assist patients with their CIEDs

centre where these devices are implanted. If they do need to be checked or monitored, it can mean, for example, a five-hour drive, or an overnight stay. Often patients’ families have to go, or patients are admitted to hospital and require ambulance service to transport them back and forth.”

The problem needs to be solved quickly – Canada has a growing aging population, many of whom will require CIEDs. Dr. MacDonald continues, “It can get very expensive for the healthcare system, certainly expensive and challenging for families to manage. New technology and better communications services will help us manage these patients locally.”

Currently, barely five per cent of the 120,000 patients who live with CIEDs have any form of remote monitoring, which usually involves patients communicating with clinics through landlines or mobile phones.

CANet and Parkash are working towards integrating with CANet’s digital health platform, VIRTUES – Virtual Integrated Reliable Transformative User-driven E-health System.

Patients often visit specialized device clinics at least twice a year, sometimes more frequently.

By monitoring the status of a CIED, VIRTUES will inform patients with what the device is doing, and allow clinics, patients, family physicians, and cardiologists to talk to one another regarding the device status

For 19 per cent of Canadians living in rural communities, they have to travel long distances to reach these clinics and healthcare facilities.

Importantly, the CANet-funded project removes the need for patients to travel outside of their local community to receive care from a highly specialized device center.

Dr. Paul MacDonald, a cardiologist at Cape Breton Regional Hospital says, “We are over 400 km away from the teaching

“The project will also help free up the time in specialized centers to focus exclusively on more problematic cases by removing the

need for routine device checks,” Parkash says.

These partnerships continue to propel CANet with its strategic business and capacity development targets by commercializing new technologies.

“The main factors that will contribute to the success of this program are ongoing collaborations within CANet, and developing technologies that will assist patients with their CIEDs,” Parkash says.

The CANet-funded RPM-CIED project will also help train two early career cardiac electro-physiologists dedicated to the remote monitoring strategy.

Parkash’s work is contributing to a critical CANet goal of creating highly qualified personnel at the forefront of arrhythmia research and management.

Parkash is also working on implementing the novel remote patient management system in the most effective, efficient and accessible way across the “diversity of healthcare systems and patients in Canada.” In doing so, she is helping

decrease the rates of arrhythmia, syncope and sudden cardiac death in Canada and worldwide, all critical CANet targets.

Ultimately, it is all about the patients, she notes.

Working with the project’s Patient Leader (a patient at Kingston General Hospital), in consultation with nine other CIED patients across Canada, will help ensure that the CANet-funded project puts patients concerns first and foremost, providing patient-centered CIED care.

One of the key surveys in the project, for example, asks patients how they accommodate cardiac devices in their daily lives, encourages them to share any device-related distress that they face, and bring forth any body image concerns related to having a device implanted.

“Rather than have patients be passive recipients of treatment, we want them to active partners in directing and taking responsibility for their healthcare,” Parkash says.

Meet Dr. R. Parkash Dr. Ratika Parkash is an outcomes and clinical trials researcher in atrial fibrillation and cardiac implantable electrical devices.

She was previously Chair of the Canadian Heart Rhythm Society Device Committee and, as such, led research on Riata (St Jude Medical) in Canada which was accepted for publication in Heart Rhythm in 2013.

Dr. Parkash is the principle investigator and main author of Atrial Substrate Modification With Aggressive Blood Pressure Lowering to Prevent AF, a CIHR-funded, multicenter clinical trial examining the use of aggressive blood pressure lowering in patients undergoing catheter ablation for atrial fibrillation. She is also co-investigator of IMPACT-AF.

C-SCAN project builds Canada’s first detailed database of sudden cardiac arrest cases “It bothers me when I cannot answer a question,” Dr. Paul Dorian says.

A few years ago, a patient, having survived a sudden cardiac arrest asked Dorian if there were other survivors out there like him.

Dorian didn’t know the answer.

Now, the University of Toronto Medicine professor, along with a group of researchers – all part of the Canadian Resuscitation Outcomes Consortium (CanROC) – has teamed up with CANet to search for answers.

C-SCAN, a comprehensive, unique registry will help us fully understand the causes and outcomes of SCA The Canadian Sudden Cardiac Arrest Network Registry (C-SCAN) will be the country’s first comprehensive database of sudden cardiac arrest (SCA) cases.

“We have no idea how many people in Canada get cardiac arrests,” Dorian says.

“Is the number going up or down? How many survive? What’s their average age?

Does it affect more men or women? We simply don’t know.”

CANet’s role will go beyond tallying numbers, and the details of age and sex.

help us better understand how SCAs and other cardiac rhythm disorders impact patients as well as their families.”

“With CANet’s help, we will have an idea of patients’ health conditions before and after they suffered from SCA,” Dorian says.

They are also, according to Dorian, powerful advocates who work with city councils and government bodies to promote increased CPR and AED training and raise awareness for inherited cardiac rhythm disorders and SCAs.

C-SCAN, a comprehensive, unique registry will help us fully understand the causes and outcomes of SCA

“CANet, with its resources, funding and patient partners are helping us apply our knowledge in better, more effective ways,” Dorian says.

He and his team will get to know the patient’s medical history; what happened in the minutes, hours, and days leading up to a SCA? Did they, for example, have a heart attack last week or were they complaining of chest pain a month ago? How many patients survived SCA? Has there been a follow-up?

Ultimately, the C-SCAN project, with its detailed tally of SCA cases, patient histories, and other details – the location of the SCAs, actions taken by paramedics, patient survival rates, for example – will be critical for implementing effective prediction and prevention strategies.

So far, most SCA-related research use public reporting, and death certificates to identify and classify SCA cases.

“You cannot improve what you cannot measure,” Dorian says.

C-SCAN will go beyond these limited sources of information; it will not only use CanROC’s existing database of SCA cases but also include coroner’s reports – a vital trove of healthrelated information, which are usually buried under slowmoving administrative and bureaucratic procedures.

He is hunting for answers. CANet is right there with him.

CANet, Dorian mentions, is critical in establishing relationships with coroner’s offices.

“C-SCAN, a comprehensive, unique registry will help us fully understand the causes and outcomes of SCA,” Dorian says.

An increased understanding will help doctors formulate better prediction and prevention strategies.

The C-SCAN initiative will contribute to CANet’s strategic goal of achieving a 10 per cent drop in sudden cardiac death across Canada.

Dorian has plans beyond the registry.

He highlights two potential offshoots of the CANet-funded C-SCAN project – one involves teaching 9-1-1 dispatchers to give better phone instructions to bystanders who call in to report a SCA. Another is to educate the public to recognize warning signs of an impending SCA, teaching them to use Automated External Defibrillators (AEDs), and strategically placing AEDs in easy-to-find locations throughout buildings, and public spaces.

CANet, with its resources, funding and patient partners are helping us apply our knowledge in better, more effective ways In his quest to reduce the occurrence of SCAs, Dorian is utilizing a critical pillar of CANet – its patient partners.

“Patient partners are very important for us,” Dorian says. “They

Improving the care and survival for pre-hospital SCD victims Many things have been tried to improve the number of times people do CPR. So far, the only thing that really increased the number of times that someone did CPR is when 9-1-1 attendants started to give CPR instructions to callers over the phone. The only problem is that about 25% of cardiac arrest victims gasp for air in the first few minutes. This can fool the 9-1-1 callers and attendants into thinking that the victim is still alive.

A teaching tool to assist 9-1-1 attendants recognize abnormal breathing has been developed to help save the lives of even more cardiac arrest victims across Canada.

The teaching tool has four components: 1) Information about the significance of abnormal breathing.

2) Demonstration on how to recognize it.

3) Practice of skills required to recognize abnormal breathing.

4) Ongoing monitoring and feedback on performance.

Learn more about the efficacy of this teaching tool from Dr. Christian Vaillancourt in our online video library.

Combining genetic counselling with clinical assessments to tackle sudden cardiac death (SCD) “The impact of sudden cardiac death is second only to all cancers in terms of life-years lost,” says CANet investigator and professor at University of British Columbia’s Faculty of Medicine, Dr. Andrew Krahn.

He, together with fellow CANet investigator and professor at University of Toronto’s Faculty of Medicine, Dr. Robert Hamilton, is helping better diagnose and treat individuals and family members at-risk for sudden cardiac death by developing a more effective detection and prevention strategy.

The strategy, according to them, is in the genes.

We want to deliver accessible and up-to-date information to health professionals and patients The program focuses explicitly on channelopathies, and hypertrophic and arrhythmogenic cardiomyopathies – all predominant causes of SCD in young adults and children.

Genetic testing and clinical testing together are highly cost effective in preventing sudden death.

New Zealand and Sweden have already combined both and can now successfully identify more than half of the estimated disease population.

Krahn and Hamilton are working with experts from both countries to help adapt the European success story to Canada.

With this project, CANet is a step closer to reaching its strategic goal of a 10 per cent drop in SCD across Canada, while significantly improving the efficiency, effectiveness, and accessibility of arrhythmia care delivery in Canada and the world.

The Krahn-Hamilton CANet project is also building a highly interactive website with educational materials, interactive multimedia, and links to social media and patient advocacy group platforms.

“We want to deliver accessible and up-to-date information to health professionals and patients,” Dr. Krahn says.

For example, he recently partnered with Heart and Stroke Foundation to create a 75-second video on sudden cardiac death research.

It was viewed more than 11,000 times in the first 24 hours.

“We are also developing communication software and apps for public awareness, to help patients take care of themselves at home,” Dr. Hamilton adds.

“Our current system typically discovers barely ten per cent or less of these individuals,” Dr. Krahn says.

Both are working with commercial and industry partners such as Medtronic, AliveCor, and Systemas Genomics to develop such home health and technology platforms. This work also reflects CANet’s commitment and strategic goal of commercializing five to seven new technologies related to arrhythmia care delivery.

Krahn and Hamilton have received funding with CANet’s Strategic Research Grant for their project ‘The Canadian Genetic Heart Rhythm Network: Innovative Strategies to Reduce the Risk of Sudden Cardiac Death Using Novel Clinical and Population Approaches’

Aligned with CANet’s strategic goal to launch of 30-40 new experts in public and private research, Drs. Krahn and Hamilton are also creating a scientific think-tank community for students and researchers to foster communications and connections for ongoing and new projects related to SCD.

The Canadian Genetic Heart Rhythm Network is a collection of 15 centers – 12 adult and seven pediatric – across seven provinces in Canada.

The think-tank will help in “our ability to support capacity building in the field in terms of Highly Qualified Personnel, connect graduate students, medical trainees, residents and research fellows with one another, and help with patient recruitment,” Dr. Krahn says.

Each of these disorders is an inherited heart condition.

Patients will work with genetic counselors and cardiac experts.

Counselors will help family members understand the benefits, and risks for clinical & genetic assessment.

Patients will also be monitored for arrhythmias or other SCDrelated symptoms using implanted cardiac monitors.

The CANet project will develop an “accurate, up-to-date, and reliable list of risk-factors, and indicators based on information collected from questionnaires, medical data from clinical visits, and information from caregivers,” Dr. Hamilton says.

SADS partnership putting a smile on patient’s faces Pam Husband has spent 23 tireless years giving a voice to patients and families affected by inherited cardiac rhythm disorders, which often lead to sudden cardiac death.

She is the Executive Director of the Canadian Sudden Arrhythmia Death Syndromes (SADS) Foundation, Canada’s only SADS-specific patient advocacy group.

SADS conferences, held across Canada, “It is critical to bring patient voices forward, understand their experiences, and improve their healthcare experience,” Husband says.

In her eyes, patients are not only recipients of healthcare, but also its participants.

Earlier, Husband explains, the physician was the expert, and the patient is merely the receiver.

SADS conferences give patients an opportunity to approach and interact with doctors more proactively.

Most importantly, however, the conferences provide patients with a sense of belonging.

“Every patient has gone through a similar experience,” Husband says.

“People here are very good at taking each other under their wings.”

A few years ago, Husband lost her 16year old son to sudden cardiac death – he was initially misdiagnosed with idiopathic epilepsy.

The registered Canadian charity works with patients and medical professionals to raise awareness about the warning signs of SADS.

Physicians, according to Husband, learn to see patients in a different light; they get to discuss patient issues in more personal, informal way, far removed from formal clinical settings.

An estimated 700 children and young people die from a SADS condition each year in Canada – early diagnosis and proper treatment help patients lead productive lives.

“The conferences are beneficial for encouraging patients to be more engaged with the healthcare community, and actively invest in healthier lifestyles,” Husband says.

“CANet has been very helpful by including and inviting us to their meetings and conferences,” Husband says.

For example, current recommendations of acceptable levels of exercise for patients suffering from inherited cardiac rhythm disorders have come about from a combination of research studies, but also, feedback that physicians have received from patients in these conferences.

“I have strong motivation to prevent these tragedies in other families,” she says.

Many patients, Husband informs, have become role models to others like themselves, inspiring them to take charge and ownership of their health conditions.

“We are very excited about our relationship with CANet – there are opportunities on both sides, and we are really thrilled to be included in the organization,” Husband says.

As a patient-information group, SADS gets to talk to other physicians about SADS, and create opportunities to reach out to their patients.

For years, the organization has brought patients and healthcare professionals closer together through their website, social media, and importantly, their

“These inherited diseases are not just affecting one individual but whole families – so the correct diagnosis is very important,” she says.

Shortly after his death, Husband’s daughter was diagnosed with an inherited cardiac rhythm disorder.

She looks forward to making progress on that front with CANet, to achieve a 10 per cent drop in sudden cardiac death within the decade.

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.

Sudden Cardiac Deatch (SCD): Quick Facts • Up to 40,000 cardiac arrests happen in Canada each year • SCD happens when the heart unexpectedly stops working • SCD is usually caused by arrhythmias, and these arrhythmias may be triggered by other issues • SCD may be prevented through medication, an implantable cardioverter defibrillator, or catheter ablation

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 in part 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