Redefining what success looks like
In fall of 2018, 3100 Patient Alumni members took about 15 minutes to respond to a survey about their lived experience after a heart event. The survey, developed by Dr. Louise Sun and her team, sought to better understand what outcomes were important to patients. From a purely medical perspective, living is considered a good outcome – even if the patient may be bed bound and in a vegetative state. From a patient perspective, quality of life can be equally important. The goal was to define “a successful outcome” from a patient perspective to be considered alongside the medical definition of success in assessing the impacts of different medical care options.
The survey asked a series of questions to identify at what point certain experiences would be considered acceptable after their heart event and those that would be considered to be living with a disability. It was found, for example, that 3 or more non-elective hospitalizations per year following the heart event would be considered living with a disability. But one or two hospitalizations in a year was acceptable as part of a successful outcome. Past patients were asked to provide a sense of their preferences between living as long as possible versus alternatives such as assisted living in a nursing home, for example.
Understanding what outcomes are important for patients helps physicians and surgeons advise patients in a way that allows them to make informed decisions as to their care options, given the likely impacts of different courses of treatment.
Understanding successful outcomes as defined by patients also provides insight into those outcomes that need to be measured and assessed when evaluating the impact of medical procedures or interventions.
Dr. Sun and her team are doing further work to refine the definitions of success for patients. Already, the work has generated international attention, and researchers are working together to better understand patient outcomes. Interesting dynamics in outcomes across different groups of patients – for example, between men and women – are pointing to important insights into how we assess and manage patients with heart conditions.