Functional disability and its predictors in systemic sclerosis: A study from the DeSScipher project within the EUSTAR group

Veronika K. Jaeger, Oliver Distler, Britta Maurer, Laszlo Czirják, Veronika Lóránd, Gabriele Valentini, Serena Vettori, Francesco Del Galdo, Giuseppina Abignano, Christopher Denton, Svetlana Nihtyanova, Yannick Allanore, Jerome Avouac, Gabriele Riemekasten, Elise Siegert, Dörte Huscher, Marco Matucci-Cerinic, Serena Guiducci, Marc Frerix, Ingo H. TarnerBeata Garay Toth, Beat Fankhauser, Jörg Umbricht, Anastasia Zakharova, Carina Mihai, Franco Cozzi, Sule Yavuz, Nicolas Hunzelmann, Simona Rednic, Alessandra Vacca, Tim Schmeiser, Valeria Riccieri, Paloma García De la Peña Lefebvre, Armando Gabrielli, Brigitte Krummel-Lorenz, Duska Martinovic, Codrina Ancuta, Vanessa Smith, Ulf Müller-Ladner, Ulrich A. Walker*

*Corresponding author for this work
28 Citations (Scopus)


Objectives. The multisystem manifestations of SSc can greatly impact patients' quality of life. The aim of this study was to identify factors associated with disability in SSc. Methods. SSc patients from the prospective DeSScipher cohort who had completed the scleroderma health assessment questionnaire (SHAQ), a disability score that combines the health assessment questionnaire and five visual analogue scales, were included in this analysis. The effect of factors possibly associated with disability was analysed with multiple linear regressions. Results. The mean SHAQ and HAQ scores of the 944 patients included were 0.87 (S.D. = 0.66) and 0.92 (S.D. = 0.78); 59% of the patients were in the mild to moderate difficulty SHAQ category (0≤SHAQ<1), 34% in the moderate to severe disability category (1≤SHAQ<2) and 7% in the severe to very severe disability category (2≤SHAQ≤3). The means of the visual analogue scales scores were in order of magnitude: overall disease severity (37 mm), RP (31 mm), pulmonary symptoms (24 mm), gastrointestinal symptoms (20mm) and digital ulcers (19 mm). In multiple regression, the main factors associated with high SHAQ scores were the presence of dyspnoea [modified New York Heart Association (NYHA) class IV (regression coefficient B= 0.62), modified NYHA class III (B = 0.53) and modified NYHA class II (B = 0.21; all vs modified NYHA class I)], FM (B = 0.37), muscle weakness (B = 0.27), digital ulcers (B = 0.20) and gastrointestinal symptoms (oesophageal symptoms, B= 0.16; stomach symptoms, B= 0.15; intestinal symptoms, B= 0.15). Conclusion. SSc patients perceive dyspnoea, pain, digital ulcers, muscle weakness and gastrointestinal symptoms as the main factors driving their level of disability, unlike physicians who emphasize objective measures of disability.

Original languageEnglish
JournalRheumatology (United Kingdom)
Issue number3
Pages (from-to)441-450
Number of pages10
Publication statusPublished - 01.03.2018

Research Areas and Centers

  • Academic Focus: Center for Infection and Inflammation Research (ZIEL)


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