“It's just a great muddle when it comes to food”: exploring patient decision making around gout and diet
Gout is the most common form of inflammatory arthritis, affecting 2.5% of the UK population. Epidemiological studies confirm widely-held perceptions that dietary factors can influence susceptibility to gout and trigger attacks. However, robust evidence that dietary modification effectively improves clinical manifestations or lowers serum uric acid levels is lacking. Despite this lack of evidence, patients commonly initiate dietary changes as a self-management strategy. Little is known about why, and how, patients choose to modify their diets after developing gout. The aim of this analysis was to explore patients’ perceptions of the connections between gout and diet, and to increase understanding of the ways in which these perceptions influenced their dietary choices and behaviours.
A qualitative design was used to gain a greater understanding of patient experiences and perceptions. Data from 43 semi-structured one-to-one interviews and four focus groups (17 individuals) conducted with patients with gout in the United Kingdom were transcribed. Informed consent was obtained from all participants. All data relating to gout and diet were identified and then analysed thematically. Qualitative data provide insight into the nature and range of ways in which patients’ perceptions about gout and diet influenced their everyday lives and choices.
Preliminary analysis identified four groups of patients: (1) those who did not make any dietary changes; (2) those who tried modifying their diet after diagnosis but returned to their previous habits; (3) those who created new rules and dietary routines that were maintained; and (4) those who continued to experiment with their diet. Analysis suggests that patients engaged dietary modification to look for patterns and explanations, with the aim of reducing what were otherwise seen as unpredictable attacks. Patients reported finding it difficult to know whether information about gout and diet was ‘myth or reality’, and were confused about the inconsistency between different information sources. For some patients, the intensity and frequency of attacks led to a feeling of desperation and willingness to ‘try anything’. Beliefs that diet could potentially explain and modify the timing of attacks gave patients a sense of control over the condition. However, the idea that control through diet was possible appeared to be a barrier to acceptance of management with urate lowering therapy (ULT).
Perceptions about gout and diet play a large role in the way patients make decisions about how to manage the condition in their everyday lives. There is a need to build an evidence-base around the impact of diet on gout in order that patients can make informed choices. Understanding an individual patient’s view of the role of dietary factors in gout, and how this influences their willingness to accept ULT, could help to improve gout management in primary care.