Background: Although tophi are known to affect physical function, the impact of tophi on the lives of people with gout has not been explored in detail.
Objectives: The aim of this qualitative study was to understand the experience of people living with tophaceous gout, as the first step to developing a patient-reported Tophus Impact Questionnaire.
Methods: Twenty-five people with tophaceous gout (22 men; median age, 66 years; median gout disease duration, 26 years) participated in semistructured interviews that explored their experiences and perceptions of tophi. Interviews were recorded and transcribed. The transcripts were analyzed and coded to identify themes using content analysis.
Results: Three major interrelated themes arose from the interviews. The first theme was functional impact affecting body structures and functions (causing pain, restricted joint range of motion and deformity, and complications), and causing activity limitation and participation restriction (affecting day-to-day activities, leisure activities, employment participation, and family participation). The second theme was psychological impact including low self-esteem, embarrassment, resignation, but also optimism. The third theme was the lack of impact in some participants.
Conclusions: Gouty tophi can have an important impact on many aspects of the patient’s life. In addition to the impact of tophi on physical function, tophi may also influence social and psychological functioning. Capturing these aspects of the patient experience will be important in the development of a patient-reported outcome measure of tophus burden.