CANet investigators are identifying the needs of inherited arrhythmia patients

Sometimes, all one needs to do is listen.
With CANet’s social sciences initiatives to support the examination of new approaches to research critical to the transformation of arrhythmia care practices in Canada, Hearts in Rhythm Organization (HIRO) has embarked on a pioneering nation-wide journey to listen to the problems faced by Canadians suffering from inherited heart rhythm disorders (IRD) such as inherited arrhythmia conditions and the unpredictable sudden cardiac death.
The main goal of HIRO’s journey is to provide standardized IRD care that addresses the unique psychological needs of all Canadians.
Over the next two years, with the financial support provided for this CANet-funded study, along with multiple network investigators working across four provinces, HIRO will conduct a nation-wide online survey (both in English and French) of approximately 400 IRD patients, their family members and their caregivers.
“CANet’s funding of the Social Sciences is critical in helping us reach as many Canadian inherited heart rhythm patients & families as possible,” says Brianna Davies, a Research Genetic Counsellor and CANet Highly Qualified Personnel (HQP) Trainee.
Aligned with CANet’s patient engagement goals, the HIRO survey team, consisting of cardiologists, nurses, and genetic counsellors, worked with three ‘patient-partners’ who helped develop the survey questions and provided critical feedback on how their fellow patients would interpret these questions and answer them.
“The patient partners contributed immensely to the survey; they helped us convey our ideas and better understand the needs of patients including directing future research,” lead investigator Dr. Collette Siefer says.
The information gleaned from the survey will help to identify current gaps in patient care. For example, some provinces have more accessible and higher quality IRD healthcare services than others. With the survey’s help, HIRO will work with healthcare providers and policy-makers to advocate for a standardized level of high-quality, healthcare to IRD patients anywhere in Canada.
In 2017, a pilot version of HIRO’s current survey was carried out in British Columbia. The survey revealed that more than half of the inherited arrhythmia patients in British Columbia had a desire for increased access to formal healthcare services and psychological support. Those lacking sufficient information and support often reported high stress and anxiety levels.
The current study will further advance this knowledge with the end goal of developing a series of checklists to identify inherited arrhythmia patients who are at risk of developing stress and anxiety related to their heart rhythm diagnosis,
Armed with this information, researchers, doctors, nurses and genetic counsellors will not only be able to develop tailor-made interventions (for example, securing follow-up visits with psychiatrists or encouraging increased interactions with family members) to improve the psychological needs of IA patients but will also advocate for more funding.
HIRO’s pioneering survey and its results will help facilitate crucial goals of CANet’s strategic plans – namely, a 10% drop in sudden cardiac death cases across Canada, improve the efficiency, effectiveness, and accessibility of arrhythmia care delivery in Canada, and engage patients to have a say in their own health and well-being.
With CANet’s funding and resources and HIRO’s research, patients are talking, and Canada is listening.
Survey participants will share their experiences such as the kind of health services that they can access, the quality of care that they receive, and whether or not it meets their needs.
The online survey link is available through HIRO’s website at https://heartsinrhythm.ca