PATIENT ENGAGEMENT IN ACTION!: Dr. Sun’s Research on Patient-defined Outcomes of Coronary Artery Disease
In the fall of 2019, patient alumni and caregivers volunteered to participate in a research study to identify outcomes that patients truly care about following treatment for coronary artery (heart) disease. The results of that study have now been published and work continues to build on the insight generated by our patients!
Through a consensus building process, the study participants (patient alumni, family members, caregivers and medical professionals) identified the 5 most important adverse outcomes following treatment for heart disease: severe stroke necessitating hospitalization for 14 days or more or inpatient rehabilitation, ventilator dependence, new onset or worsening heart failure, nursing home admission, and new onset dialysis. In other words, surviving a cardiac emergency isn’t always enough – for many patients, quality of life in the months and years that follow can be as important. You can read the published research results for more details.
Building a better understanding of the outcomes that matter most to patients and their loved ones helps physicians and surgeons when providing advice to patients. For example, medical professionals can share the likely impacts of different courses of treatment based on the priorities identified in this study, which in turn helps patients to make more informed choices about their options.
To further help patients with making informed choices, the possibility of building this insight into a decision aid for patients is being explored. The decision aid could be available in the form of an App that could be accessed either on your mobile phone, tablet or computer or that of a family member. After responding to a series of questions to assess risk factors, the App would provide an assessment of the probable outcomes that might result from heart surgery and alternative treatments. With that knowledge in hand, patients could make more informed decisions, in consultation with the health care team. This App is currently under development by Dr. Sun’s team and will be the first of its kind to empower patient-centered treatment decision-making.
Dr. Sun has also been contacted by other researchers interested in the approach used in this study to further build our insight with respect to patient centered definitions for successful outcomes. Bringing this focus ofhow patients define the “success” of an approach – beyond mortality – will help physicians and patients to make these difficult decisions about quality of life.
The insights for the study were generated thanks to the contributions of Heart Institute patient alumni who volunteered as Patient Partners to share their lived experience with researchers. If you would like to register to be a Patient Partner, you can do so on the University of Ottawa Heart Institute Patient Partner page.