From breathless to failure: Symptom onset and diagnostic meaning in patients with heart failure:a qualitative study

Objectives: To explore two key points in the heart failure diagnostic pathway – symptom onset and diagnostic meaning - from the patient perspective. Design: Qualitative interview study.Setting: Participants were recruited from a secondary care clinic in central England following referral from primary care. Participants: Over age 55 years with a recent (<1 year) diagnosis of heart failure confirmed by a cardiologist following initial presentation to primary care. Methods: Semi-structured interviews were carried out with 16 participants (11 men and 5 women, median age 78.5 years) in their own homes. Data were audio-recorded and transcribed. Participants were asked to describe their diagnostic journey from when they first noticed something wrong up to and including the point of diagnosis. Data were analysed using the Framework method. Results: Participants initially normalised symptoms and only sought medical help when daily activities were affected. Failure to realise that anything was wrong led to a delay in help-seeking. Participants’ understanding of the term ‘heart failure’ was variable and one participant did not know he had the condition. The term itself caused great anxiety initially but participants learnt to cope with and accept their diagnosis over time. Conclusions: Greater public awareness of symptoms and adequate explanation of ‘heart failure’ as a diagnostic label, or reconsideration of its use, are potential areas of service improvement