"They diagnosed bad heart": a qualitative exploration of patients' knowledge about and experiences with heart failure

Patient education is central to the management of individuals with heart failure; therefore, it is important to know what these patients understand and experience both clinically and personally.

This study qualitatively explored patients' knowledge regarding a heart failure diagnosis, their understanding of their cardiac care providers' treatment recommendations, and their views concerning the impact of heart failure on their daily lives and prognosis.

A qualitative study was conducted whereby data were collected through 25 telephone interviews with adults being followed for heart failure at a Veterans Affairs medical center. Subjects were interviewed using semistructured open-ended questions. Audiotaped responses were analyzed using grounded theory methods.

The majority of participants were elderly, male, and white, and had New York Heart Association class II disease. Participants without angina typically experienced a lengthy and difficult diagnostic delay, with symptoms misattributed to comorbid diseases. Most understood the importance of self-monitoring and adhering to physician recommendations, and their discussions of life-changing effects typically focused on loss of physical functioning and decreased quality of life. Although participants wanted to know their prognosis, most had not received information about it or about advance care planning.

Patients require opportunities for enhanced communication with physicians and health care team members during the challenging diagnostic period and subsequently need more information about their medical condition and prognosis.