Linda Kwakkenbos1,2,3, Brett D Thombs1,2,4,5,6,7,8, Dinesh Khanna9, Marie-Eve Carrier1, Murray Baron1,4, Daniel E Furst10, Karen Gottesman11, Frank van den Hoogen12,13, Vanessa L Malcarne14,15, Maureen D Mayes16, Luc Mouthon17,18, Warren R Nielson19,20, Serge Poiraudeau17,21,22, Robert Riggs11, Maureen Sauvé23,24, Fredrick Wigley25, Marie Hudson1,4, Susan J Bartlett4,25,26. 1. Lady Davis Institute for Medical Research, Jewish General Hospital. 2. Department of Psychiatry, McGill University, Montréal, Québec, Canada. 3. Clinical Psychology, Behavioural Science Institute, Radboud University, Nijmegen, the Netherlands. 4. Department of Medicine, McGill UniversityMontréal, Québec, Canada. 5. Department of Epidemiology, Biostatistics, and Occupational HealthMcGill University, Montréal, Québec, Canada. 6. Department of Educational and Counselling PsychologyMcGill University, Montréal, Québec, Canada. 7. Department of PsychologyMcGill University, Montréal, Québec, Canada. 8. School of Nursing, McGill University, Montréal, Québec, Canada. 9. University of Michigan Scleroderma Program, University of Michigan, Ann Arbor, Michigan, USA. 10. Division of Rheumatology, Geffen School of Medicine, University of California, Los Angeles. 11. Scleroderma Foundation, Danvers, MA, USA. 12. Department of Rheumatology, Radboud University Medical Center. 13. Department of Rheumatology, Sint Maartenskliniek, Nijmegen, The Netherlands. 14. Department of Psychology, San Diego State University. 15. San Diego Joint Doctoral Program in Clinical Psychology, San Diego State University and the University of California, San Diego, CA. 16. Department of Internal Medicine, Division of Rheumatology, McGovern Medical School, University of Texas, Houston, TX, USA. 17. Université Paris Descartes, Assistance Publique-Hôpitaux de Paris. 18. Service de Médecine Interne, Hôpital Cochin, Paris, France. 19. Beryl & Richard Ivey Rheumatology Day Programs, St Joseph's Health Care. 20. Lawson Health Research Institute, London, Ontario, Canada. 21. Service de Médecine Physique et Réadaptation, Hôpital Cochin. 22. IFR Handicap, INSERM, Paris, France. 23. Scleroderma Society of Ontario, Hamilton. 24. Scleroderma Society of Canada, Ottawa, ON, Canada. 25. Department of Medicine, Division of Rheumatology, Johns Hopkins University School of Medicine, Baltimore, MD, USA. 26. McGill University Health Center, Montréal, Québec, Canada.
Abstract
Objective: The Patient-Reported Outcomes Measurement Information System (PROMIS)-29 assesses seven health-related quality of life domains plus pain intensity. The objective was to examine PROMIS-29v2 validity and explore clinical associations in patients with SSc. Methods: English-speaking SSc patients in the Scleroderma Patient-centered Intervention Network Cohort from 26 sites in Canada, the USA and the UK completed the PROMIS-29v2 between July 2014 and November 2015. Enrolling physicians provided medical data. To examine convergent validity, hypotheses on the direction and magnitude of correlations with legacy measures were tested. For clinical associations, t -tests were conducted for dichotomous variables and PROMIS-29v2 domain scores. Effect sizes (ESs) were labelled as small (<0.25), small to moderate (0.25-0.45), moderate (0.46-0.55), moderate to large (0.56-0.75) and large (>0.75). Results: There were 696 patients (87% female), mean ( s . d .) disease duration 11.6 (8.7) years, 57% with limited cutaneous subtype. Validity indices were consistent with seven of nine hypotheses (| r | =0.51-0.87, P < 0.001), with minor divergence for two hypotheses. Gastrointestinal involvement was associated with significantly worse outcomes for all eight PROMIS-29v2 domains (moderate or moderate to large ES in six of eight). Presence of joint contractures was associated with significant decrements in seven domains (small or small to moderate ESs). Skin thickening, diffuse cutaneous subtype and presence of overlap syndromes were significantly associated (small or small to moderate ESs) with five or six domains. Conclusion: This study further establishes the validity of the PROMIS-29v2 in SSc and underlines the importance of gastrointestinal symptoms and joint contractures in reduced health-related quality of life.
Objective: The Patient-Reported Outcomes Measurement Information System (PROMIS)-29 assesses seven health-related quality of life domains plus pain intensity. The objective was to examine PROMIS-29v2 validity and explore clinical associations in patients with SSc. Methods: English-speaking SSc patients in the SclerodermaPatient-centered Intervention Network Cohort from 26 sites in Canada, the USA and the UK completed the PROMIS-29v2 between July 2014 and November 2015. Enrolling physicians provided medical data. To examine convergent validity, hypotheses on the direction and magnitude of correlations with legacy measures were tested. For clinical associations, t -tests were conducted for dichotomous variables and PROMIS-29v2 domain scores. Effect sizes (ESs) were labelled as small (<0.25), small to moderate (0.25-0.45), moderate (0.46-0.55), moderate to large (0.56-0.75) and large (>0.75). Results: There were 696 patients (87% female), mean ( s . d .) disease duration 11.6 (8.7) years, 57% with limited cutaneous subtype. Validity indices were consistent with seven of nine hypotheses (| r | =0.51-0.87, P < 0.001), with minor divergence for two hypotheses. Gastrointestinal involvement was associated with significantly worse outcomes for all eight PROMIS-29v2 domains (moderate or moderate to large ES in six of eight). Presence of joint contractures was associated with significant decrements in seven domains (small or small to moderate ESs). Skin thickening, diffuse cutaneous subtype and presence of overlap syndromes were significantly associated (small or small to moderate ESs) with five or six domains. Conclusion: This study further establishes the validity of the PROMIS-29v2 in SSc and underlines the importance of gastrointestinal symptoms and joint contractures in reduced health-related quality of life.
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