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Psychometric Evaluation of the Scleroderma Skin Questionnaire: A Novel Patient Reported Outcome for Skin Disease in Patients with 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. The Journal of rheumatology Yu, J. M., VanBuren, J. M., Child, A., Alvey, J. S., Mandl, L. A., Pinheiro, L. C., Assassi, S., Bernstein, E. J., Castelino, F. V., Chung, L., Evnin, L., Frech, T. M., Hant, F. N., Hummers, L. K., Khanna, D., Lakin, K. S., Lebiedz-Odrobina, D., Luo, Y., Makol, A., Molitor, J. A., Moore, D. F., Richardson, C., Sandorfi, N., Shah, A. A., Shah, A., Shanmugam, V. K., Skaug, B., Steen, V. D., Volkmann, E. R., Gordon, J. K. 2025

Abstract

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.The SSQ was administered to 799 adults (mean age 52.7; 82% female) enrolled in the SSc Collaborative National Quality and Efficacy Registry (CONQUER). Internal consistency was determined using Cronbach's a and McDonald's ? total (?t). The correlation of the SSQ was assessed with the modified Rodnan Skin Score (mRSS), Physician Global Assessment (PGA), Scleroderma Health Assessment Questionnaire (SHAQ), Patient-Reported Outcomes Measurement Information System-29 (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 six months ("SSQ 6-Month") and six-month change in mRSS.Cronbach's a was 0.90 and ?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) versus limited subtypes (r=0.24; all p<0.05). The SSQ was also moderately-to-strongly correlated with PROMIS-29 physical (r=-0.50) and pain interference subscales (r=0.61), strongly with SHAQ's HAQ score (r=0.63) and severity subscale (r=0.62), and moderately with PGA's scleroderma activity score (r=0.48; all p<0.05). SSQ 6-Month correlated weakly with the six-month change in mRSS (r=0.26; p<0.05).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.

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