Patient-perceived treatment burden (PPTB), i.e., “the work of being a patient,” following heart transplantation (HTx) can affect patients' experiences of care, sense of self-efficacy in managing their health, and may lead to medication nonadherence, often with deleterious clinical outcomes. However, few studies have comprehensively evaluated PPTB in transplant recipients. We sought to characterize PPTB following HTx.

Methods: We recruited adult HTx recipients from the University of Colorado and the University of California San Diego to participate in focus groups (patients ≥ 1 year post-HTx) and individual semi-structured interviews (patients < 1 year post-HTx). Audio-recorded focus groups and interviews were transcribed verbatim, coded using data management software, and thematically analyzed to identify patterns of experience.

Results: The study included 37 total patients, from 5 focus groups (n=23; mean age 58 ± 12 years, 52% women, 74% Caucasian), and 14 individual interviews (mean age 55 ± 8 years, 79% men, 79% Caucasian). Findings revealed 5 major themes that contributed to PPTB: medications; health behaviors (self-care); health system interactions; challenges with employment and financial burden; and social and emotional impact. Within these themes, HTx recipients reported challenges of taking medications, including side effect management, cost, and timing of medication refills. They also experienced psychological impact, including depression and concern for caregiver burden, and often found physical activity-related lifestyle changes to be difficult. The need for additional education was least commonly reported, owing to pre-HTx support and positive interactions with health systems. However, patients reported that health system support declined in the years following HTx.

Conclusion: This qualitative analysis revealed multiple challenges that contribute to PPTB and affect post-HTx care. Better assessments are needed to identify patients with high PPTB to allow for targeted interventions, particularly subsequent to transplant, to improve adherence and clinical outcomes in the HTx population.

CITATION INFORMATION: Deininger K, Reich J, Hirsch J, Graveline S, Feist A, LaFleur J, Smith S, Ambardekar A, Lindenfeld J, Aquilante C. Qualitative Assessment of Patient-Perceived Treatment Burden Following Cardiac Transplantation. Am J Transplant. 2016;16 (suppl 3).

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