Open Access Research BMJ Open: first published as 10.1136/bmjopen-2016-013648 on 10 March 2017. Downloaded from From breathless to failure: symptom onset and diagnostic meaning in patients with heart failure— a qualitative study C J Taylor,1 F D R Hobbs,1 T Marshall,2 F Leyva-Leon,3 N Gale4 To cite: Taylor CJ, ABSTRACT et al Strengths and limitations of this study Hobbs FDR, Marshall T, . Objectives: To explore 2 key points in the heart From breathless to failure: failure diagnostic pathway—symptom onset and ▪ symptom onset and This study is novel in exploring crucial points in diagnostic meaning—from the patient perspective. diagnostic meaning the heart failure diagnostic pathway from the in patients with heart failure Design: Qualitative interview study. patient perspective to identify areas where care —a qualitative study. BMJ Setting: Participants were recruited from a secondary may be improved. Open 2017;7:e013648. care clinic in central England following referral from ▪ The initial period where participants first experi- doi:10.1136/bmjopen-2016- primary care. enced symptoms, the point they realised there 013648 Participants: Over age 55 years with a recent was something wrong, and the impact this had (<1 year) diagnosis of heart failure confirmed by a on help-seeking is described in detail. ▸ Prepublication history for cardiologist following initial presentation to primary ▪ The terminology of ‘heart failure’, the impact on this paper is available online. care. the patient and the appropriateness of the term To view these files please Methods: Semistructured interviews were carried out itself are questioned. visit the journal online with 16 participants (11 men and 5 women, median ▪ The study recruited participants from a single (http://dx.doi.org/10.1136/ age 78.5 years) in their own homes. Data were audio- secondary care clinic which may limit bmjopen-2016-013648). recorded and transcribed. Participants were asked to generalisability. Received 2 August 2016 describe their diagnostic journey from when they first Revised 17 December 2016 noticed something wrong up to and including the point Accepted 19 January 2017 of diagnosis. Data were analysed using the framework http://bmjopen.bmj.com/ method. Recognising symptoms and making a diagno- Results: Participants initially normalised symptoms sis is therefore vital to allow appropriate and and only sought medical help when daily activities timely management. were affected. Failure to realise that anything was The diagnosis of most chronic conditions is wrong led to a delay in help-seeking. Participants’ reliant on patients realising that something is understanding of the term ‘heart failure’ was variable wrong, and seeking help.9 The start of many and 1 participant did not know he had the condition. illnesses can, though, be difficult to recog- The term itself caused great anxiety initially but nise, and may sometimes only be appreciated participants learnt to cope with and accept their in retrospect, once a diagnosis has been on September 27, 2021 by guest. Protected copyright. diagnosis over time. reached.10 Symptoms vary according to 1Nuffield Department of Conclusions: Greater public awareness of symptoms disease and some may be more easily recog- ‘ ’ Primary Care Health and adequate explanation of heart failure as a nised as pathological than others.11 12 diagnostic label, or reconsideration of its use, are Sciences, University of Chronic obstructive pulmonary disease Oxford, Oxford, UK potential areas of service improvement. 2Institute of Applied Health (COPD) is associated with gradual onset of Research, University of breathlessness which can get worse over 13 Birmingham, Birmingham, time. Smoking is a causal factor but smokers UK may initially put their symptoms down to the 3 Aston Medical Research INTRODUCTION smoking itself rather than the permanent Insitutue, Aston Medical 14 School, Birmingham, UK Heart failure is a clinical syndrome affecting lung damage which results in COPD. In 1 4Health Services 1% of adults in developed countries. It is contrast, some diseases present with acute Management Centre, associated with distressing symptoms, typic- symptoms which might be recognised more University of Birmingham, ally breathlessness, fatigue and swollen easily. Acute myocardial infarction may cause – Birmingham, UK ankles, and poor outcomes for patients.2 5 crushing central chest pain and patients with Correspondence to However, there are drug treatments, device stroke may experience a sudden onset of Dr CJ Taylor; therapies and exercise-based interventions one-sided weakness, speech disturbance or – [email protected] which improve quality of life and survival.6 8 facial asymmetry. Early intervention can lead Taylor CJ, et al. BMJ Open 2017;7:e013648. doi:10.1136/bmjopen-2016-013648 1 Open Access BMJ Open: first published as 10.1136/bmjopen-2016-013648 on 10 March 2017. Downloaded from to life-saving treatment and public health campaigns with a duration of 30–60 min, were conducted by the have focused on raising awareness of these symptoms.15 16 lead author (CJT), a female general practitioner (GP) Unlike myocardial infarction or stroke, heart failure and clinical researcher trained in qualitative methods. symptoms are often insidious in onset and the patient An interview topic guide was used to ensure that key experience of early symptoms and decision-making areas were covered to achieve the aims and objectives of around seeking medical attention prior to a diagnosis has the study. Early interviews were reviewed and discussed not been evaluated. with NG, an experienced medical sociologist, with A diagnostic label is important medically to lead on to expertise in qualitative methods. Minor modifications an appropriate treatment plan but the terminology used were made to the interview guide after two interviews, in can have an important impact on the patient. They must the light of emerging themes from the data: in particu- make sense of their diagnosis and, for chronic condi- lar, further information was sought on the meanings tions, adapt to living with the disease.17 According to associated with heart failure. All interviews were guidelines, at the end of the diagnostic pathway for recorded using a digital voice recorder. The audio files heart failure, patients should receive a formal diagnosis were downloaded to a secure network. which is confirmed by an echocardiogram and explained to them by a specialist.18 However, some Analysis studies have identified that patients are not necessarily All interviews were transcribed verbatim, then analysed told, or do not retain, the diagnostic label or may not using the framework method.20 21 Data were anon- 19 understand what it means. ymised by removing any information which would make This study explores the experiences of patients with a the patient identifiable. Transcripts were read and recent diagnosis of heart failure with a focus on the re-read to ensure familiarisation, then initially coded by symptom onset and diagnosis parts of the pathway to hand. The coding was reviewed by a second coder (NG), explore how and when patients realised something was and an independent experienced qualitative research wrong and what the term ‘heart failure’ means to them. fellow (SS), to ensure that the type and range of codes applied was appropriate. The coding lists were used to develop an analytical framework organised into catego- METHODS ries. In total, there were 150 codes organised into 17 cat- Study design and setting egories. All interview transcripts were then coded using Patient experiences of pathways to receiving clinical care the software package NVivo V.10. are best understood via an in-depth qualitative approach Coded data were exported from NVivo according to that enables collection of data on attitudes, perceptions individual codes and saved as separate documents. The and responses. Semistructured interviews were con- data for each code were read, re-read and then sum- http://bmjopen.bmj.com/ ducted with patients who had recently received a diagno- marised for each of the 16 participants in the study. sis of heart failure until saturation of key emergent Microsoft Excel was used to manage the summarised themes was achieved, that is, additional data were no data. A new worksheet was used for each category. Each longer adding new themes to the data set. The inter- category was then interpreted using an analytical memo views were primarily with study participants but the con- to explore emerging themes and concepts. tribution of a relative, if present, was also welcomed. Participants were recruited from a secondary care heart failure clinic serving a large, socioeconomically diverse RESULTS population in central England. Patients with a recent Participants on September 27, 2021 by guest. Protected copyright. (<1 year ago) diagnosis of heart failure over the age of 55 Invitation letters were sent out to a total of 100 eligible who had been referred from primary care were invited participants identified by the heart failure clinic. In total, for interview. This was to ensure adequate recall of 21 participants returned the reply slip and 16 agreed to events. Patients not able to give written informed consent take part (1 participant had changed her mind when or who were too unwell to take part were excluded. contacted, 1 had recently been admitted to hospital and Purposive sampling was planned in order to achieve 3 participants were not contactable). Between October demographic variation. The aim was to recruit a total of and December 2014, 15 participants were interviewed in 20 patients over the age of 55 years with at least two parti- their homes and 1 by telephone. Interviews lasted an cipants from each decile age group. A mix of men and average of 42 min (range 21–74 min). Five women and women in each age group and patients of white, Asian 11 men participated, their median age was 78.5 years and black ethnicity were also sought. Arrangements for (range 52–87 years) and all but 1 participant was white an interpreter to be used where needed were put in place British.