Psychometric Evaluation of the Scleroderma Skin Questionnaire: A Novel Patient-Reported Outcome for Skin Disease in Patients With Systemic Sclerosis

Authors

• Jeong Min Yu, J.M. Yu, MD, MS, K.S. Lakin, MD, MS, Division of Rheumatology, Hospital for Special Surgery, New York City, New York; aprilyuj@gmail.com.
• John M. VanBuren, J.M. VanBuren, PhD, A. Child, MS, J.S. Alvey, MS, Division of Pediatric Critical Care, Department of Pediatrics, University of Utah, Salt Lake City, Utah.
• Angela Child, J.M. VanBuren, PhD, A. Child, MS, J.S. Alvey, MS, Division of Pediatric Critical Care, Department of Pediatrics, University of Utah, Salt Lake City, Utah.
• Jessica S. Alvey, J.M. VanBuren, PhD, A. Child, MS, J.S. Alvey, MS, Division of Pediatric Critical Care, Department of Pediatrics, University of Utah, Salt Lake City, Utah.
• Lisa A. Mandl, L.A. Mandl, MD, MPH, Division of Rheumatology, Hospital for Special Surgery, and Department of Medicine, Weill Cornell Medicine, Department of Population Health Sciences, Weill Cornell Medicine, New York City, New York.
• Laura C. Pinheiro, L.C. Pinheiro, PhD, MPH, Department of Medicine, Weill Cornell Medicine, and Department of Population Health Sciences, Weill Cornell Medicine, New York City, New York.
• Shervin Assassi, S. Assassi, MD, MS, B. Skaug, MD, PhD, Division of Rheumatology, University of Texas Health Science Center at Houston, Houston, Texas.
• Elana J. Bernstein, E.J. Bernstein, MD, MS, Y. Luo, MD, Division of Rheumatology, Department of Medicine, Columbia University Irving Medical Center, Vagelos College of Physicians and Surgeons, New York, New York.
• Flavia V. Castelino, F.V. Castelino, MD, Division of Rheumatology, Massachusetts General Hospital, Boston, Massachusetts.
• Lorinda Chung, L. Chung, MD, MS, Division of Immunology and Rheumatology, Stanford University and Palo Alto VA Health Care System, Palo Alto, California.
• Luke Evnin, L. Evnin, PhD, Scleroderma Research Foundation, San Francisco, California.
• Tracy M. Frech, T.M. Frech, MD, MS, Division of Rheumatology and Immunology, Vanderbilt University Medical Center, Tennessee Valley Health Care System, Veterans Affair Medical Center, Nashville, Tennessee.
• Faye N. Hant, F.N. Hant, DO, MS, Division of Rheumatology, Medical University of South Carolina, Charleston, South Carolina.
• Laura K. Hummers, L.K. Hummers, MD, MS, A.A. Shah, MD, MHS, Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland.
• Dinesh Khanna, D. Khanna, MBBS, MS, Division of Rheumatology, University of Michigan, Ann Arbor, Michigan.
• Kimberly S. Lakin, J.M. Yu, MD, MS, K.S. Lakin, MD, MS, Division of Rheumatology, Hospital for Special Surgery, New York City, New York.
• Dorota Lebiedz-Odrobina, D. Lebiedz-Odrobina, MD, Division of Rheumatology, Department of Internal Medicine, University of Utah, Salt Lake City, Utah.
• Yiming Luo, E.J. Bernstein, MD, MS, Y. Luo, MD, Division of Rheumatology, Department of Medicine, Columbia University Irving Medical Center, Vagelos College of Physicians and Surgeons, New York, New York.
• Ashima Makol, A. Makol, MBBS, Division of Rheumatology, Department of Internal Medicine, Mayo Clinic, Rochester, Minnesota.
• Jerry A. Molitor, J.A. Molitor, MD, PhD, Division of Rheumatic and Autoimmune Diseases, Department of Medicine, University of Minnesota, Minneapolis, Minnesota.
• Duncan F. Moore, D.F. Moore, MD, C. Richardson, MD, Division of Rheumatology, Northwestern University, Chicago, Illinois.
• Carrie Richardson, D.F. Moore, MD, C. Richardson, MD, Division of Rheumatology, Northwestern University, Chicago, Illinois.
• Nora Sandorfi, N. Sandorfi, MD, Division of Rheumatology, University of Pennsylvania, Philadelphia, Pennsylvania.
• Ami A. Shah, L.K. Hummers, MD, MS, A.A. Shah, MD, MHS, Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland.
• Ankoor Shah, A. Shah, MD, Division of Rheumatology and Immunology, Duke University, Durham, North Carolina.
• Victoria K. Shanmugam, V.K. Shanmugam, MBBS, The George Washington University School of Medicine and Health Sciences, Department of Anatomy, George Washington University, Washington, DC.
• Brian Skaug, S. Assassi, MD, MS, B. Skaug, MD, PhD, Division of Rheumatology, University of Texas Health Science Center at Houston, Houston, Texas.
• Virginia D. Steen, V.D. Steen, MD, Georgetown University Medical Center, Washington, DC.
• Elizabeth R. Volkmann, E.R. Volkmann, MD, MS, Division of Rheumatology, Department of Medicine, University of California, Los Angeles, David Geffen School of Medicine, Los Angeles, California.
• Jessica K. Gordon, J.K. Gordon, MD, MS, Division of Rheumatology, Hospital for Special Surgery, and Department of Medicine, Weill Cornell Medicine, New York City, New York, USA.

Document Type

Journal Article

Publication Date

3-1-2025

Journal

The Journal of rheumatology

Volume

52

Issue

3

DOI

10.3899/jrheum.2024-0736

Keywords

outcome assessment; outcomes; registries; scleroderma; skin; systemic sclerosis

Abstract

OBJECTIVE: We aimed to evaluate the psychometric properties of the Scleroderma Skin Questionnaire (SSQ), a novel patient-reported outcome (PRO) to assess systemic sclerosis (SSc)-related skin symptoms. METHODS: Participants were recruited from the SSc Collaborative National Quality and Efficacy Registry (CONQUER). Internal consistency was determined using Cronbach α and McDonald ω total (ω). The correlation of the SSQ was assessed with the modified Rodnan skin score (mRSS), physician global assessment (PGA), Scleroderma Health Assessment Questionnaire, 29-item Patient-Reported Outcomes Measurement Information System (PROMIS-29), and patient global assessment to assess criterion, convergent, and divergent validity. Correlations were also assessed between patients' self-reported recall of skin changes over the past 6 months ("SSQ 6-Month") and 6-month change in mRSS. RESULTS: The SSQ was administered to 799 adults (mean age 52.7; 83% female) enrolled in CONQUER. Cronbach α was 0.90 and ω was 0.92, indicating high internal consistency. The SSQ was moderately correlated with mRSS (r 0.56), with stronger correlations in diffuse (r 0.54) vs limited cutaneous subtypes (r 0.24; all P < 0.05). The SSQ was also moderately-to-strongly correlated with PROMIS-29 physical function (r -0.50) and pain interference subscales (r 0.61), strongly with Health Assessment Questionnaire score (r 0.63) and severity subscale (r 0.62), and moderately with PGA SSc activity score (r 0.48; all P < 0.05). SSQ 6-Month correlated weakly with the 6-month change in mRSS (r 0.26; P < 0.05). CONCLUSION: SSQ demonstrated high reliability and moderate correlation with mRSS and legacy PROs. This study provides initial support for SSQ, but not SSQ 6-Month, to assess skin symptoms in patients with SSc.

APA Citation

Yu, Jeong Min; VanBuren, John M.; Child, Angela; Alvey, Jessica S.; Mandl, Lisa A.; Pinheiro, Laura C.; Assassi, Shervin; Bernstein, Elana J.; Castelino, Flavia V.; Chung, Lorinda; Evnin, Luke; Frech, Tracy M.; Hant, Faye N.; Hummers, Laura K.; Khanna, Dinesh; Lakin, Kimberly S.; Lebiedz-Odrobina, Dorota; Luo, Yiming; Makol, Ashima; Molitor, Jerry A.; Moore, Duncan F.; Richardson, Carrie; Sandorfi, Nora; Shah, Ami A.; Shah, Ankoor; Shanmugam, Victoria K.; Skaug, Brian; Steen, Virginia D.; Volkmann, Elizabeth R.; and Gordon, Jessica K., "Psychometric Evaluation of the Scleroderma Skin Questionnaire: A Novel Patient-Reported Outcome for Skin Disease in Patients With Systemic Sclerosis" (2025). GW Authored Works. Paper 6920.
https://hsrc.himmelfarb.gwu.edu/gwhpubs/6920

Department

Anatomy and Regenerative Biology