Heart Failure in the Young: The Patient Perspective and Lived-Experience

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Thomas M. Roston
Marc Bains
Jillianne Code
Sean A. Virani

Abstract

Heart failure (HF) is an often-debilitating syndrome that carries a lifelong burden of increased morbidity and mortality. While most affected individuals are elderly with ischemic heart disease, there are subsets of younger individuals who will develop HF. In this group, non-ischemic causes of cardiomyopathy are more common, optimal therapies are less clear, and the personal and societal impact is often greater. The lived-experience of younger patients highlights several unmet needs not addressed by large HF trials that influence survival, personal and financial wellness and return to activities of daily living. In Canada, there is an increasing focus on the patient perspective, especially amongst young individuals, when devising guidelines, policies and promoting advocacy in HF. This article describes the lived-experience of HF through the case example of a young patient, summarizes the clinical challenges in this age-group, and discusses opportunities to elevate the patient experience of care as a performance indicator.

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