Background: People living with heart failure (HF) are particularly vulnerable after hospital discharge. An alliance between patient authors, clinicians, industry, and co-developers of HF programs can represent an effective way to address the unique concerns and obstacles people living with HF face during this period. The aim of this narrative review article is to discuss challenges and opportunities of this approach, with the goal of improving participation and clinical outcomes of people living with HF.
Methods: This article was co-authored by people living with HF, heart transplant recipients, patient advocacy representatives, cardiologists with expertise in HF care, and industry representatives specializing in patient engagement and cardiovascular medicine, and reviews opportunities and challenges for people living with HF in the post-hospital discharge period to be more integrally involved in their care. A literature search was conducted, and the authors collaborated through two virtual roundtables and via email to develop the content for this review article.
Results: Numerous transitional-care programs exist to ease the transition from the hospital to the home and to provide needed education and support for people living with HF, to avoid rehospitalizations and other adverse outcomes. However, many programs have limitations and do not integrally involve patients in the design and co-development of the intervention. There are thus opportunities for improvement. This can enable patients to better care for themselves with less of the worry and fear that typically accompany the transition from the hospital. We discuss the importance of including people living with HF in the development of such programs and offer suggestions for strategies that can help achieve these goals. An underlying theme of the literature reviewed is that education and engagement of people living with HF after hospitalization are critical. However, while clinical trial evidence on existing approaches to transitions in HF care indicates numerous benefits, such approaches also have limitations.
Conclusion: Numerous challenges continue to affect people living with HF in the post-hospital discharge period. Strategies that involve patients are needed, and should be encouraged, to optimally address these challenges.
Keywords: Education program; Heart failure; Patient experience; Patient involvement; Patient perspective; Patient self-management; Patient tools and resources; Post–hospital discharge period; Self-management; Transitional care.
Heart failure (HF) is a common, serious condition that causes debilitating symptoms. HF results in an enormous burden on individuals and society. For many people living with HF, the transition to the home after hospital discharge is filled with uncertainty, fear, miscommunication, feelings of vulnerability, loss of control, high rates of being hospitalized again, and the need for education about HF self-care. People living with HF need reliable support, personalized education, and encouragement to minimize disruption to their lives and to enable them to participate in and take ownership of their health. Interventions after hospitalization focused on self-care and education have been shown to improve confidence, medication adherence rates, quality of life, and self-care, and to reduce the risk of death or being hospitalized again. However, not all studies have found benefits. Many interventions do not include patients in their co-design and co-development, and/or co-authorship of the study publications. In this review article, we discuss challenges and opportunities for better involving people living with HF in self-care HF programs, both as co-creators and as participants. A literature search was conducted and the authors collaborated through email and two remote discussions to develop the article’s content. We discuss the burden of HF and existing approaches to care after hospitalization. We also provide an overview of some of the challenges and opportunities in involving people living with HF more closely in their care. We conclude that patient-focused solutions aligned with behavioral approaches and education related to self-care may help overcome these challenges.
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