Experiences of gout-related disability from the patients' perspective: a mixed methods study

Disability is a common problem in patients with gout. Recently, the Health Assessment Questionnaire Disability Index (HAQ-DI) was recommended for assessing patient-reported activity limitations in gout. However, few studies have explored experiences and issues of disability from the perspective of gout patients themselves. The objectives of this study were to explore disability issues in patients with gout and to examine the content validity of the HAQ-DI in this patient group. Two studies were performed: a semi-structured interview study with seven male gout patients and a cross-sectional survey study among 34 other patients with gout. In both studies, specific examples of activity limitations were elicited using open-ended methods. The survey study additionally aimed to quantify the relevance of the activities listed in the HAQ-DI. Most patients experienced several gout attacks in the previous year. Limitations were reported to occur during a flare, but patients were generally not limited between attacks. During an attack, patients mainly experienced limitations related to mobility, especially walking and climbing stairs. Patients also mentioned limitations in activities related to domestic life, such as gardening and doing housework. Limitations related to self-care or activities requiring the use of the upper extremities were rarely mentioned. Corresponding HAQ-DI items were skewed towards very low disability scores over the past week. Assessments of gout-related disability should particularly focus on mobility and lower extremity functioning and should consider the intermittent nature of the disease. The HAQ-DI may not adequately meet these requirements, suggesting the need to explore other measures of gout-related disability.