Opetaia Aati1, William J Taylor, Anne Horne, Nicola Dalbeth. 1. From the *Bone and Joint Research Group, Department of Medicine, Faculty of Medical and Health Sciences, University of Auckland, Auckland; and †Department of Medicine, University of Otago, Wellington, New Zealand.
Abstract
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.
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.
Authors: Nicola Dalbeth; Thomas Bardin; Michael Doherty; Frédéric Lioté; Pascal Richette; Kenneth G Saag; Alexander K So; Lisa K Stamp; Hyon K Choi; Robert Terkeltaub Journal: Nat Rev Rheumatol Date: 2017-08-10 Impact factor: 20.543
Authors: Sarah Stewart; Nicola Dalbeth; Simon Otter; Peter Gow; Sunil Kumar; Keith Rome Journal: J Foot Ankle Res Date: 2017-06-19 Impact factor: 2.303
Authors: Mike Frecklington; Nicola Dalbeth; Peter McNair; Trish Morpeth; Alain C Vandal; Peter Gow; Keith Rome Journal: Arthritis Res Ther Date: 2019-04-24 Impact factor: 5.156
Authors: Mike Frecklington; Anita Williams; Nicola Dalbeth; Peter McNair; Peter Gow; Keith Rome Journal: J Foot Ankle Res Date: 2019-07-12 Impact factor: 2.303