Abstract

Abstract Funding Acknowledgements Type of funding sources: Public Institution(s). Main funding source(s): Ministry of education Background In patients with heart failure (HF), symptom perception’ is a self-care requirement for effective disease management. However, previous studies have reported that these patients have inadequate symptom perception. When patients experience somatic changes, they generally interpret these as symptoms, which can cause them to adopt coping behaviours. To improve symptom perception, it is important that health care providers understand the somatic changes experienced during an acute HF exacerbation based on patients’ representation of symptoms, rather than clinical symptom names. Purpose This study aimed to clarify the comprehensive picture of somatic changes experienced by patients with HF during acute exacerbations by analysing the expressions they use to describe these changes. Methods In semi-structured interviews, 21 patients with HF hospitalised due to acute exacerbation were asked to use their own words to describe any somatic change they perceived before hospitalisation. A three-step text mining process was used to analyse the expressions patients used to describe these changes. First, the frequency of use was calculated for the terms used to describe somatic changes. Next, the extracted words were classified into clusters based on concatenation between words. Finally, cluster names were assigned using patient expressions. Results The sample was 76.2% male, and the mean patient age was 71.3 ± 13.7 years. Of the 21 patients, 52.4% had a history of hospitalisation. The interviews generated 59 pages of data. Analysis indicated that 472 terms were related to somatic changes. The most frequently used terms were ‘breath’ (46 times), ‘painful’ (40 times), ‘foot’ (29 times), ‘ha-ha’ (the sound of gasping; 28 times) and ‘walking’ (25 times). The somatic changes experienced by patients were classified into 10 clusters based on concatenation between words. The cluster names were ‘shortness of breath when moving’, ‘not being able to walk the distances one normally walks without a rest’, ‘not being able to sleep at night because of difficulty breathing’, ‘increased frequency of urination at night’, ‘swollen and tense legs’, ‘socks leave marks in legs’, ‘projecting abdomen and tighter pants’, ‘fatigue while moving’, ‘increased phlegm and a feeling of discomfort in the throat’, and ‘a vague feeling of being unwell’. Conclusions Instead of employing symptom names used by medical professionals, patients described their perceived somatic changes in diverse ways using various expressions, such as mimetic words and metaphorical expressions. Moreover, some patients described vague physical changes that could not be classified with corresponding symptom names. These findings indicate that the symptoms patients experience during an acute exacerbation cannot always be categorised using clinical symptom names.

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