Ada Man1, Jeannette K Correa2, Jessica Ziemek3, Robert W Simms3, David T Felson3,4, Robert Lafyatis5. 1. Section of Rheumatology, University of Manitoba, Winnipeg, Manitoba, Canada. 2. Department of Psychology, Boston University, Boston, Massachusetts, USA. 3. Section of Rheumatology, Boston University School of Medicine, Boston, Massachusetts, USA. 4. NIHR Manchester Biomedical Research Unit, Manchester, UK. 5. Division of Rheumatology and Clinical Immunology, University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania, USA.
Abstract
OBJECTIVES: We developed a patient-reported outcome (PRO) instrument to assess the skin-related quality of life in patients with systemic sclerosis (SSc). METHODS: Participants with SSc provided input on skin-related health effects through focus groups. We developed items for scleroderma skin PRO (SSPRO) to encompass these effects. Further consideration from cognitive interviews and an expert panel led to reduction and modification of items. A 22-item SSPRO was field tested. Psychometric analysis included test-retest reliability, internal consistency and exploratory factor analysis (EFA). Construct validity was assessed through correlation with other participant and physician-assessed measures. RESULTS: 140 participants completed the SSPRO: mean age was 53.4 years, median disease duration was 5 years, 82.1% were female and 32.9% had diffuse cutaneous SSc. EFA supported four factors in SSPRO corresponding to hypothesised constructs: physical effects, physical limitations, emotional effects and social effects. Removal of 4/22 items resulted in acceptable goodness-of-fit statistics. Test-retest reliability (intraclass correlation coefficient=0.61-0.83) was moderate to high and internal consistency (Cronbach's α=0.89-0.96) was high. SSPRO correlated strongly with other participant-reported measures (r=0.59-0.88) suggesting construct validity, and less well with physician-assessed measures (r=0.31-0.40). SSPRO scores were significantly different for each level of participant-reported skin severity, and for limited versus diffuse cutaneous SSc. CONCLUSIONS: SSPRO has been developed with extensive patient input and demonstrates evidence for reliability and validity. It is complementary to existing measures of SSc skin involvement with emphasis on the patient's experience. Further research is needed to assess its sensitivity to change. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.
OBJECTIVES: We developed a patient-reported outcome (PRO) instrument to assess the skin-related quality of life in patients with systemic sclerosis (SSc). METHODS:Participants with SSc provided input on skin-related health effects through focus groups. We developed items for scleroderma skin PRO (SSPRO) to encompass these effects. Further consideration from cognitive interviews and an expert panel led to reduction and modification of items. A 22-item SSPRO was field tested. Psychometric analysis included test-retest reliability, internal consistency and exploratory factor analysis (EFA). Construct validity was assessed through correlation with other participant and physician-assessed measures. RESULTS: 140 participants completed the SSPRO: mean age was 53.4 years, median disease duration was 5 years, 82.1% were female and 32.9% had diffuse cutaneous SSc. EFA supported four factors in SSPRO corresponding to hypothesised constructs: physical effects, physical limitations, emotional effects and social effects. Removal of 4/22 items resulted in acceptable goodness-of-fit statistics. Test-retest reliability (intraclass correlation coefficient=0.61-0.83) was moderate to high and internal consistency (Cronbach's α=0.89-0.96) was high. SSPRO correlated strongly with other participant-reported measures (r=0.59-0.88) suggesting construct validity, and less well with physician-assessed measures (r=0.31-0.40). SSPRO scores were significantly different for each level of participant-reported skin severity, and for limited versus diffuse cutaneous SSc. CONCLUSIONS: SSPRO has been developed with extensive patient input and demonstrates evidence for reliability and validity. It is complementary to existing measures of SSc skin involvement with emphasis on the patient's experience. Further research is needed to assess its sensitivity to change. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.
Authors: Robert Lafyatis; Julio C Mantero; Jessica Gordon; Nina Kishore; Mary Carns; Howard Dittrich; Robert Spiera; Robert W Simms; John Varga Journal: J Invest Dermatol Date: 2017-08-12 Impact factor: 8.551
Authors: John D Pauling; Joana Caetano; Corrado Campochiaro; Giacomo De Luca; Ana Maria Gheorghiu; Maria Grazia Lazzaroni; Dinesh Khanna Journal: J Scleroderma Relat Disord Date: 2019-11-25
Authors: Robert Spiera; Laura Hummers; Lorinda Chung; Tracy M Frech; Robyn Domsic; Vivien Hsu; Daniel E Furst; Jessica Gordon; Maureen Mayes; Robert Simms; Robert Lafyatis; Viktor Martyanov; Tammara Wood; Michael L Whitfield; Scott Constantine; Elizabeth Lee; Nancy Dgetluck; Barbara White Journal: Arthritis Rheumatol Date: 2020-07-17 Impact factor: 10.995
Authors: Ariane L Herrick; Deborah J Griffiths-Jones; W David Ryder; Justin C Mason; Christopher P Denton Journal: J Scleroderma Relat Disord Date: 2020-09-17