Should we screen for heart failure? A qualitative study to explore the acceptability of a potential new diagnostic pathway

Problem

Heart failure (HF) is a global health burden impacting 40 million people worldwide and mortality rates are similar to many cancers. Early treatment improves outcomes so new strategies to achieve timely diagnosis are a research priority. Screening is one potential strategy but no research to date has considered patient’s attitudes to a potential HF screening programme. The aim of this qualitative study is to explore patient’s experiences of HF diagnosis, their understanding of the condition and their attitude towards screening for HF.

Approach

Qualitative study using semi-structured interviews with people with a diagnosis of HF. Participants were recruited through HF specialist nurses and GP practices in the Thames Valley region. We aimed to recruit a maximum variation sample of men and women and will continue interviewing until we are confident our interview sample has sufficient information power. Interviews were conducted over the telephone or online, according to preference, and audio recorded for analysis. Interviews were transcribed and analysed thematically.

Findings

Data collection is ongoing. To date, 14 interviews have been conducted with 4 women and 10 men. For many HF patients the diagnostic journey was complicated. Patients described symptoms that developed insidiously and were initially mild so they did not go to their GP for some months. Other patients described delays in diagnosis even though they did seek help for their symptoms. When the diagnosis came many patients describe a combination of relief and despair. Although having an explanation for their symptoms was helpful, many patients were shocked by the term “heart failure” and this had strong associations with death and treatment futility. Whilst some patients had their diagnosis carefully explained, other patients were told indirectly, perhaps via a letter after a clinic appointment and this contributed to the shock. Potential HF screening was viewed as a positive intervention and many advocated for earlier diagnosis and treatment but the terminology used to describe HF screening was raised as an important area for consideration.

Consequences

This study provides insights into the challenges faced by patients in their journey to HF diagnosis and explores the acceptability of HF screening. Although most patients supported early diagnosis and a potential screening programme, the term HF requires very careful consideration in a screening context.