title: Toward development of a Tophus Impact Questionnaire: a qualitative study exploring the experience of people with tophaceous gout.
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.
  
  
  OBJECTIVE
  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.affiliation: 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.
authors.forename: Opetaia
authors.initials: O
authors.lastname: Aati
authors.forename: William J
authors.initials: WJ
authors.lastname: Taylor
authors.forename: Anne
authors.initials: A
authors.lastname: Horne
authors.forename: Nicola
authors.initials: N
authors.lastname: Dalbeth
mesh_terms: D000328:Adult; D000367:Age Factors; D000368:Aged; D000369:Aged, 80 and over; D015210:Arthritis, Gouty / Q000175:diagnosis / Q000188:drug therapy / Q000523:psychology; D004185:Disability Evaluation; D018450:Disease Progression; D005260:Female; D006073:Gout / Q000175:diagnosis* / Q000188:drug therapy / Q000523:psychology*; D006074:Gout Suppressants / Q000627:therapeutic use; D006801:Humans; D008297:Male; D008875:Middle Aged; D011584:Psychology; D036301:Qualitative Research; D011788:Quality of Life; D018570:Risk Assessment; D012720:Severity of Illness Index; D012737:Sex Factors; D013315:Stress, Psychological; D011795:Surveys and Questionnaires
chemical_list: D006074:Gout Suppressants