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

Jeong Min Yu¹, John M VanBuren², Angela Child², Jessica S Alvey², Lisa A Mandl³, Laura C Pinheiro⁴, Shervin Assassi⁵, Elana J Bernstein⁶, Flavia V Castelino⁷, Lorinda Chung⁸, Luke Evnin⁹, Tracy M Frech¹⁰, Faye N Hant¹¹, Laura K Hummers¹², Dinesh Khanna¹³, Kimberly S Lakin¹⁴, Dorota Lebiedz-Odrobina¹⁵, Yiming Luo⁶, Ashima Makol¹⁶, Jerry A Molitor¹⁷, Duncan F Moore¹⁸, Carrie Richardson¹⁸, Nora Sandorfi¹⁹, Ami A Shah¹², Ankoor Shah²⁰, Victoria K Shanmugam²¹, Brian Skaug⁵, Virginia D Steen²², Elizabeth R Volkmann²³, Jessica K Gordon²⁴

Affiliations

¹ 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.
² 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.
³ 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.
⁴ 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.
⁵ S. Assassi, MD, MS, B. Skaug, MD, PhD, Division of Rheumatology, University of Texas Health Science Center at Houston, Houston, Texas.
⁶ 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.
⁷ F.V. Castelino, MD, Division of Rheumatology, Massachusetts General Hospital, Boston, Massachusetts.
⁸ L. Chung, MD, MS, Division of Immunology and Rheumatology, Stanford University and Palo Alto VA Health Care System, Palo Alto, California.
⁹ L. Evnin, PhD, Scleroderma Research Foundation, San Francisco, California.
¹⁰ 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.
¹¹ F.N. Hant, DO, MS, Division of Rheumatology, Medical University of South Carolina, Charleston, South Carolina.
¹² L.K. Hummers, MD, MS, A.A. Shah, MD, MHS, Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland.
¹³ D. Khanna, MBBS, MS, Division of Rheumatology, University of Michigan, Ann Arbor, Michigan.
¹⁴ J.M. Yu, MD, MS, K.S. Lakin, MD, MS, Division of Rheumatology, Hospital for Special Surgery, New York City, New York.
¹⁵ D. Lebiedz-Odrobina, MD, Division of Rheumatology, Department of Internal Medicine, University of Utah, Salt Lake City, Utah.
¹⁶ A. Makol, MBBS, Division of Rheumatology, Department of Internal Medicine, Mayo Clinic, Rochester, Minnesota.
¹⁷ J.A. Molitor, MD, PhD, Division of Rheumatic and Autoimmune Diseases, Department of Medicine, University of Minnesota, Minneapolis, Minnesota.
¹⁸ D.F. Moore, MD, C. Richardson, MD, Division of Rheumatology, Northwestern University, Chicago, Illinois.
¹⁹ N. Sandorfi, MD, Division of Rheumatology, University of Pennsylvania, Philadelphia, Pennsylvania.
²⁰ A. Shah, MD, Division of Rheumatology and Immunology, Duke University, Durham, North Carolina.
²¹ V.K. Shanmugam, MBBS, The George Washington University School of Medicine and Health Sciences, Department of Anatomy, George Washington University, Washington, DC.
²² V.D. Steen, MD, Georgetown University Medical Center, Washington, DC.
²³ E.R. Volkmann, MD, MS, Division of Rheumatology, Department of Medicine, University of California, Los Angeles, David Geffen School of Medicine, Los Angeles, California.
²⁴ 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.

PMID: 39814444
DOI: 10.3899/jrheum.2024-0736

Free article

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

Jeong Min Yu et al. J Rheumatol. 2025.

Free article

. 2025 Mar 1;52(3):263-269.

doi: 10.3899/jrheum.2024-0736.

Authors

Affiliations

¹ 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.
² 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.
³ 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.
⁴ 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.
⁵ S. Assassi, MD, MS, B. Skaug, MD, PhD, Division of Rheumatology, University of Texas Health Science Center at Houston, Houston, Texas.
⁶ 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.
⁷ F.V. Castelino, MD, Division of Rheumatology, Massachusetts General Hospital, Boston, Massachusetts.
⁸ L. Chung, MD, MS, Division of Immunology and Rheumatology, Stanford University and Palo Alto VA Health Care System, Palo Alto, California.
⁹ L. Evnin, PhD, Scleroderma Research Foundation, San Francisco, California.
¹⁰ 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.
¹¹ F.N. Hant, DO, MS, Division of Rheumatology, Medical University of South Carolina, Charleston, South Carolina.
¹² L.K. Hummers, MD, MS, A.A. Shah, MD, MHS, Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland.
¹³ D. Khanna, MBBS, MS, Division of Rheumatology, University of Michigan, Ann Arbor, Michigan.
¹⁴ J.M. Yu, MD, MS, K.S. Lakin, MD, MS, Division of Rheumatology, Hospital for Special Surgery, New York City, New York.
¹⁵ D. Lebiedz-Odrobina, MD, Division of Rheumatology, Department of Internal Medicine, University of Utah, Salt Lake City, Utah.
¹⁶ A. Makol, MBBS, Division of Rheumatology, Department of Internal Medicine, Mayo Clinic, Rochester, Minnesota.
¹⁷ J.A. Molitor, MD, PhD, Division of Rheumatic and Autoimmune Diseases, Department of Medicine, University of Minnesota, Minneapolis, Minnesota.
¹⁸ D.F. Moore, MD, C. Richardson, MD, Division of Rheumatology, Northwestern University, Chicago, Illinois.
¹⁹ N. Sandorfi, MD, Division of Rheumatology, University of Pennsylvania, Philadelphia, Pennsylvania.
²⁰ A. Shah, MD, Division of Rheumatology and Immunology, Duke University, Durham, North Carolina.
²¹ V.K. Shanmugam, MBBS, The George Washington University School of Medicine and Health Sciences, Department of Anatomy, George Washington University, Washington, DC.
²² V.D. Steen, MD, Georgetown University Medical Center, Washington, DC.
²³ E.R. Volkmann, MD, MS, Division of Rheumatology, Department of Medicine, University of California, Los Angeles, David Geffen School of Medicine, Los Angeles, California.
²⁴ 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.

PMID: 39814444
DOI: 10.3899/jrheum.2024-0736

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_t). 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_t 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.

Keywords: outcome assessment; outcomes; registries; scleroderma; skin; systemic sclerosis.

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

Affiliations

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

Authors

Affiliations

Abstract

MeSH terms

LinkOut - more resources

Full Text Sources

Medical

Miscellaneous