Veronika K Jaeger1, Oliver Distler2, Britta Maurer2, Laszlo Czirják3, Veronika Lóránd3, Gabriele Valentini4, Serena Vettori4, Francesco Del Galdo5, Giuseppina Abignano5, Christopher Denton6, Svetlana Nihtyanova6, Yannick Allanore7, Jerome Avouac7, Gabriele Riemekasten8, Elise Siegert9, Dörte Huscher10, Marco Matucci-Cerinic11, Serena Guiducci11, Marc Frerix12, Ingo H Tarner12, Beata Garay Toth13, Beat Fankhauser14, Jörg Umbricht14, Anastasia Zakharova15, Carina Mihai16, Franco Cozzi17, Sule Yavuz18, Nicolas Hunzelmann19, Simona Rednic20, Alessandra Vacca21, Tim Schmeiser22, Valeria Riccieri23, Paloma García de la Peña Lefebvre24, Armando Gabrielli25, Brigitte Krummel-Lorenz26, Duska Martinovic27, Codrina Ancuta28, Vanessa Smith29, Ulf Müller-Ladner12, Ulrich A Walker1. 1. Department of Rheumatology, University Hospital Basel, Basel. 2. Department of Rheumatology, University Hospital Zurich, Zurich, Switzerland. 3. Department of Rheumatology and Immunology, Medical Center, University of Pécs, Pécs, Hungary. 4. Department of Rheumatology, Second University of Naples, Naples, Italy. 5. NIHR Leeds Musculoskeletal Biomedical Research Unit, Leeds Teaching Hospitals NHS Trust and Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, Leeds. 6. Department of Rheumatology, University College London, Royal Free Hospital, London, UK. 7. Department of Rheumatology, University of Paris Descartes, Paris, France. 8. Department of Rheumatology, University Clinic Schleswig-Holstein, Lübeck. 9. Department of Rheumatology and Clinical Immunology, University Hospital Charité. 10. German Rheumatism Research Centre, Berlin, Germany. 11. Department of Rheumatology, University of Florence, Florence, Italy. 12. Department of Rheumatology and Clinical Immunology, Justus-Liebig University Giessen, Kerckhoff Clinic Bad Nauheim, Bad Nauheim, Germany. 13. Federation of European Scleroderma Associations Aisbl, Budapest, Hungary. 14. new-win SW Solutions AG, Suhr, Switzerland. 15. VA Nasonova Institute of Rheumatology, Moscow, Russian Federation. 16. Department of Internal Medicine and Rheumatology, Dr Ion Cantacuzino Clinical Hospital, Carol Davila University of Medicine and Pharmacy, Bucharest, Romania. 17. Rheumatology Unit, Department of Medicine, University of Padova, Padova, Italy. 18. Department of Rheumatology, University of Marmara, Altunizade-Istanbul, Turkey. 19. Department of Dermatology, University of Cologne, Cologne, Germany. 20. Clinica Reumatologie, University of Medicine & Pharmacy, Cluj-Napoca, Romania. 21. II Chair of Rheumatology, University of Cagliari-Policlinico Universitario, Monserrato, Italy. 22. Department of Rheumatology and Immunology, Krankenhaus St Josef, Wuppertal, Germany. 23. Divisione di Reumatologia, Università di Roma La Sapienza, Roma, Italy. 24. Servicio de Reumatología, Hospital Universitario Madrid Norte Sanchinarro, Madrid, Spain. 25. Istituto di Clinica Medica Generale, Ematologia ed Immunologia Clinica, Università Politecnica delle Marche, Ancona, Italy. 26. Endokrinologikum Frankfurt, Frankfurt, Germany. 27. Division of Rheumatology, University Hospital of Split, Split, Croatia. 28. Rheumatology 2 Department, Clinical Rehabilitation Hospital, University of Medicine and Pharmacy 'Grigore T. Popa', Iasi, Romania. 29. Faculty of Internal Medicine, Ghent University, Ghent, Belgium.
Abstract
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 (20 mm) 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.
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 (20 mm) 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.
Authors: Shelley E Condon; Scott C Roesch; Philip J Clements; Daniel E Furst; Michael H Weisman; Vanessa L Malcarne Journal: J Scleroderma Relat Disord Date: 2020-06-22
Authors: Lesley Ann Saketkoo; Tracy Frech; Cecília Varjú; Robyn Domsic; Jessica Farrell; Jessica K Gordon; Carina Mihai; Nora Sandorfi; Lee Shapiro; Janet Poole; Elizabeth R Volkmann; Monika Lammi; Kendra McAnally; Helene Alexanderson; Henrik Pettersson; Faye Hant; Masataka Kuwana; Ami A Shah; Vanessa Smith; Vivien Hsu; Otylia Kowal-Bielecka; Shervin Assassi; Maurizio Cutolo; Cristiane Kayser; Victoria K Shanmugam; Madelon C Vonk; Kim Fligelstone; Nancy Baldwin; Kerri Connolly; Anneliese Ronnow; Beata Toth; Maureen Suave; Sue Farrington; Elana J Bernstein; Leslie J Crofford; László Czirják; Kelly Jensen; Monique Hinchclif; Marie Hudson; Matthew R Lammi; Jennifer Mansour; Nadia D Morgan; Fabian Mendoza; Mandana Nikpour; John Pauling; Gabriela Riemekasten; Anne-Marie Russell; Mary Beth Scholand; Elise Seigart; Tatiana Sofia Rodriguez-Reyna; Laura Hummers; Ulrich Walker; Virginia Steen Journal: Best Pract Res Clin Rheumatol Date: 2021-09-15 Impact factor: 4.991
Authors: Juliane K Stöcker; Madelon C Vonk; Frank H J van den Hoogen; Maria W G Nijhuis-van der Sanden; Julia Spierings; J Bart Staal; Ton Satink; Cornelia H M van den Ende Journal: BMC Rheumatol Date: 2020-07-31
Authors: Victoria K Shanmugam; Tracy M Frech; Virginia D Steen; Laura K Hummers; Ami A Shah; Elana J Bernstein; Dinesh Khanna; Jessica K Gordon; Flavia V Castelino; Lorinda Chung; Faye N Hant; Emily Startup; John M VanBuren; Luke B Evnin; Shervin Assassi Journal: Clin Rheumatol Date: 2019-10-30 Impact factor: 2.980
Authors: Henrik Pettersson; Helene Alexanderson; Janet L Poole; Janos Varga; Malin Regardt; Anne-Marie Russell; Yasser Salam; Kelly Jensen; Jennifer Mansour; Tracy Frech; Carol Feghali-Bostwick; Cecília Varjú; Nancy Baldwin; Matty Heenan; Kim Fligelstone; Monica Holmner; Matthew R Lammi; Mary Beth Scholand; Lee Shapiro; Elizabeth R Volkmann; Lesley Ann Saketkoo Journal: Best Pract Res Clin Rheumatol Date: 2021-07-01 Impact factor: 4.991