Concerns of patients with gout are incompletely captured by OMERACT-endorsed domains of measurement for chronic gout studies.

Background: Appropriate evaluation of disease or treatment outcomes requires a good understanding of the aspects of the disease and its consequences that actually matter to patients. The OMERACT process has identified several domains of outcome measurement for chronic gout, but patient involvement has only been briefly described.

Objectives: To make the results of patient involvement more explicit, the current study reports on an exercise carried out in the early part of the OMERACT domain identification process.

Methods: Patients with gout were asked to identify areas of life affected by gout. These areas were rated (0-10) and ranked for importance by a second group of patients with gout recruited from both primary care and a rheumatology clinic.

Results: Thirty-one patients with gout performed the initial generation of areas of importance. These areas were combined to form 14 items, which were ranked and scored by 107 patients. Four areas were ranked first to third most important by at least 20% of participants. These were pain (median rating, 10), loss of joint motion (median rating, 9), work loss (median rating, 7), and joint inflammation/swelling (median rating, 8). Three additional areas were ranked highly by at least 10% of patients: difficulty with wearing shoes, having to undertake a restrictive diet, and sleep.

Conclusions: These data largely confirmed the relevance of the gout OMERACT domains while identifying additional issues for patients that require further investigation.