title: Patient preference disability questionnaire in systemic sclerosis: a cross-sectional survey.
abstract: OBJECTIVE
  To assess patient priorities concerning disability in systemic sclerosis (SSc).
  
  
  METHODS
  A total of 150 SSc patients (22 men) fulfilling the American College of Rheumatology and/or LeRoy and Medsger criteria for SSc were evaluated by the McMaster Toronto Arthritis Patient Preference Disability Questionnaire (MACTAR), Karnofsky performance status (KPS), Cochin Hand Function Scale, Health Assessment Questionnaire (HAQ), Hospital Anxiety and Depression Scale, Mouth Handicap in SSc (MHISS) scale, and global perception regarding their health status. Correlations between scores were analyzed using Spearman's coefficient. Logistic regression analysis was used to determine factors associated with patients' global perception of their health.
  
  
  RESULTS
  Of the patients investigated, 81 (54%) had limited cutaneous SSc, 65 (43.3%) diffuse SSc, and 4 (2.7%) limited SSc. The 3 disability domains most often cited were walking (82 patients [54.6%]), housekeeping (67 patients [44.6%]), and sport activities (59 patients [39.3%]). The MACTAR score correlated moderately with KPS (r = 0.58) but only weakly with the HAQ score (r = 0.38). In multivariate analysis, 2 factors were associated with patients' negative global perception of their health status: KPS (odds ratio [OR] 1.07, 95% confidence interval [95% CI] 1.00-1.15) and MHISS score (OR 0.93, 95% CI 0.88-0.99).
  
  
  CONCLUSIONS
  For assessing SSc patient priorities concerning disability, the MACTAR has acceptable construct validity. Its weak correlation with the HAQ suggests that it adds useful information on disability.
authors.affiliation: Paris Descartes University, UPRES EA 4058, and Assistance Publique Hôpitaux de Paris, Cochin Hospital, Paris, France. luc.mouthon@cch.aphp.fr
authors.forename: Luc
authors.initials: L
authors.lastname: Mouthon
authors.forename: François
authors.initials: F
authors.lastname: Rannou
authors.forename: Alice
authors.initials: A
authors.lastname: Bérezné
authors.forename: Christian
authors.initials: C
authors.lastname: Pagnoux
authors.forename: Philippe
authors.initials: P
authors.lastname: Guilpain
authors.forename: François
authors.initials: F
authors.lastname: Goldwasser
authors.forename: Michel
authors.initials: M
authors.lastname: Revel
authors.forename: Loïc
authors.initials: L
authors.lastname: Guillevin
authors.forename: Jacques
authors.initials: J
authors.lastname: Fermanian
authors.forename: Serge
authors.initials: S
authors.lastname: Poiraudeau
mesh_terms: D000203:Activities of Daily Living; D000368:Aged; D003430:Cross-Sectional Studies; D004185:Disability Evaluation; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010358:Patient Participation; D011788:Quality of Life; D012595:Scleroderma, Systemic / Q000150:complications* / Q000175:diagnosis*; D012720:Severity of Illness Index