“It's just a great muddle when it comes to food”: exploring patient decision making around gout and diet

Talk Code: 
EP1A.05
Presenter: 
Jennifer Liddle
Co-authors: 
Priyanka Chandratre, Samantha Hider, Christian Mallen, Jane Richardson, Edward Roddy
Author institutions: 
Keele University

Problem

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.

Approach

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.

Findings

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).

Consequences

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.

Submitted by: 
Jennifer Liddle
Funding acknowledgement: 
This paper presents independent research funded by the National Institute for Health Research School for Primary Care Research (NIHR SPCR), Grant Reference Number 136. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. PC is funded by the National Institute for Health Research (NIHR) School for Primary Care Research. CDM is funded by the National Institute for Health Research (NIHR) Collaborations for Leadership in Applied Health Research and Care West Midlands, the NIHR School for Primary Care Research and a NIHR Research Professorship in General Practice (NIHR-RP-2014-04-026).