Mapping patients’ experiences from initial symptoms to gout diagnosis: a qualitative exploration
Jennifer Liddle, Edward Roddy, Christian D Mallen, Samantha L Hider, Suman Prinjha, Sue Ziebland, Jane C Richardson
Objective To explore patients’ experiences from initial symptoms to receiving a diagnosis of gout. Design Data from in-depth semistructured interviews were used to construct themes to describe key features of patients’ experiences of gout diagnosis. Participants and setting A maximum variation sample of 43 UK patients with gout (29 men; 14 women; age range 32–87 years) were recruited from general practices, rheumatology clinics, gout support groups and through online advertising. Results Severe joint pain, combined with no obvious signs of physical trauma or knowledge of injury, caused confusion for patients attempting to interpret their symptoms. Reasons for delayed consultation included self-diagnosis and/or self-medication, reluctance to seek medical attention, and financial/work pressures. Factors potentially contributing to delayed diagnosis after consultation included reported misdiagnosis, attacks in joints other than the first metatarsophalangeal joint, and female gender. The limitations in using serum uric acid (SUA) levels for diagnostic purposes were not always communicated effectively to patients, and led to uncertainty and lack of confidence in the accuracy of the diagnosis. Resistance to the diagnosis occurred in response to patients’ beliefs about the causes of gout and characteristics of the people likely to be affected. Diagnosis prompted actions, such as changes in diet, and evidence was found of self-monitoring of SUA levels. Conclusions This study is the first to report data specifically about patients’ pathways to initial consultation and subsequent experiences of gout diagnosis. A more targeted approach to information provision at diagnosis would improve patients’ experiences.