Nothing Is Wrong With My Heart: Patient-Reported Understanding of Heart Failure With Preserved Ejection Fraction

Heart failure with preserved ejection fraction (HFpEF) represents the fastest growing subtype of heart failure, and one-half of patients with HFpEF are unaware of a heart failure diagnosis. The purpose of this study was to explore patient-reported barriers to understanding HFpEF.

Adult patients with HFpEF, recruited from a local health care system, participated in a qualitative study. Participants were asked to describe their heart condition and what they want to learn more. Interviews were transcribed and analyzed using thematic analysis.

Twenty-one participants with HFpEF, aged 60 years, 62% Black, and 67% women, were included. Most participants had at least a high school degree (72%). Mean duration of heart failure was 4 years; 95% had hypertension, 43% had diabetes, and mean body mass index was 38.4 kg/m². All participants were unaware they had HFpEF, with 60% reporting they had congestive heart failure. Thematic analysis identified 4 themes: (1) disease uncertainty, (2) impact of initial diagnosis, (3) scramble to learn about HF, and (4) opportunities to improve care. Barriers to understanding HFpEF included lack of information from providers, limited provider availability, ineffective provider communication and using complex medical terminology, short duration of clinic visits, and fatigue during the clinic visit. Participants expressed multiple needs in health information, mental health support, and counseling on the management and prognosis of HFpEF. Finally, participants desired improved communication with their health care team.

Participants were not aware they had HFpEF and expressed multiple suggestions for future interventions.