Disability, fatigue, pain and their associates in early diffuse cutaneous systemic sclerosis: the European Scleroderma Observational Study

Peytrignet S, Denton CP, Lunt M, Hesselstrand R, Mouthon L, Silman A, Pan X, Brown E, Czirjak L, Distler J, Distler O, Fligelstone K, Gregory WJ, Ochiel R, Vonk M, Ancuta C, Ong VH, Farge D, Hudson M, Matucci-Cerinic M, Balbir-Gurman A, Midtvedt O, Jordan AC, Stevens W, Moinzadeh P, Hall FC, Agard C, Anderson ME, Diot E, Madhok R, Akil M, Buch MH, Chung L, Damjanov N, Gunawardena H, Lanyon P, Ahmad Y, Chakravarty K, Jacobsen S, Macgregor AJ, Mchugh N, Muller-Ladner U, Riemekasten G, Becker M, Roddy J, Carreira PE, Fauchais AL, Hachulla E, Hamilton J, Inanc M, Mclaren JS, Van Laar JM, Pathare S, Proudman S, Rudin A, Sahhar J, Coppere B, Serratrice C, Sheeran T, Veale DJ, Grange C, Trad GS, Herrick AL (2017)


Publication Type: Journal article

Publication year: 2017

Journal

DOI: 10.1093/rheumatology/kex410

Abstract

Our aim was to describe the burden of early dcSSc in terms of disability, fatigue and pain in the European Scleroderma Observational Study cohort, and to explore associated clinical features.Patients completed questionnaires at study entry, 12 and 24 months, including the HAQ disability index (HAQ-DI), the Cochin Hand Function Scale (CHFS), the Functional Assessment of Chronic Illness Therapy-fatigue and the Short Form 36 (SF36). Associates examined included the modified Rodnan skin score (mRSS), current digital ulcers and internal organ involvement. Correlations between 12-month changes were also examined.The 326 patients recruited (median disease duration 11.9 months) displayed high levels of disability [mean ( s . d .) HAQ-DI 1.1 (0.83)], with 'grip' and 'activity' being most affected. Of the 18 activities assessed in the CHFS, those involving fine finger movements were most affected. High HAQ-DI and CHFS scores were both associated with high mRSS (? = 0.34, P < 0.0001 and ? = 0.35, P < 0.0001, respectively). HAQ-DI was higher in patients with digital ulcers ( P = 0.004), pulmonary fibrosis ( P = 0.005), cardiac ( P = 0.005) and muscle involvement ( P = 0.002). As anticipated, HAQ-DI, CHFS, the Functional Assessment of Chronic Illness Therapy and SF36 scores were all highly correlated, in particular the HAQ-DI with the CHFS (? = 0.84, P < 0.0001). Worsening HAQ-DI over 12 months was strongly associated with increasing mRSS (? = 0.40, P < 0.0001), decreasing hand function (? = 0.57, P < 0.0001) and increasing fatigue (? = -0.53, P < 0.0001).The European Scleroderma Observational Study highlights the burden of disability in early dcSSc, with high levels of disability and fatigue, associating with the degree of skin thickening (mRSS). Impaired hand function is a major contributor to overall disability.

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Involved external institutions

Salford Royal NHS Foundation Trust GB United Kingdom (GB) University College London (UCL) GB United Kingdom (GB) Technion - Israel Institute of Technology IL Israel (IL) University of Copenhagen DK Denmark (DK) North Bristol NHS Trust GB United Kingdom (GB) Llandudno General Hospital GB United Kingdom (GB) Nottingham University Hospitals GB United Kingdom (GB) University of Belgrade / Универзитет у Београду RS Serbia (RS) Stanford University US United States (USA) (US) University of Leeds GB United Kingdom (GB) Sheffield Teaching Hospitals NHS Foundation Trust GB United Kingdom (GB) Glasgow Royal Infirmary (GRI) GB United Kingdom (GB) Centre Hospitalier Régional Universitaire de Tours FR France (FR) The University of Liverpool GB United Kingdom (GB) Université de Nantes FR France (FR) Cambridge University Hospital GB United Kingdom (GB) Universität zu Köln DE Germany (DE) University of Manchester GB United Kingdom (GB) Assistance Publique-Hôpitaux de Paris (AP-HP) FR France (FR) Hospices Civils de Lyon (CHU) FR France (FR) St Vincent's University Hospital IE Ireland (IE) Cannock Chase Hospital GB United Kingdom (GB) Hôpital Saint Joseph FR France (FR) Hôpital Edouard Herriot FR France (FR) Monash University AU Australia (AU) University of Gothenburg / Göteborgs universitet SE Sweden (SE) Royal Adelaide Hospital AU Australia (AU) James Cook University Hospital GB United Kingdom (GB) University Medical Centre Utrecht (UMC Utrecht) NL Netherlands (NL) Whytemans Brae Hospital GB United Kingdom (GB) Istanbul University / İstanbul Üniversitesi TR Turkey (TR) Gateshead Health NHS Foundation Trust GB United Kingdom (GB) LILLE 1 University - Science and Technology FR France (FR) Hospital Center University De Limoges Dupuytren FR France (FR) Hospital Universitario 12 de Octubre ES Spain (ES) Royal Perth Hospital AU Australia (AU) Charité - Universitätsmedizin Berlin DE Germany (DE) Universität zu Lübeck DE Germany (DE) Justus-Liebig-Universität Gießen DE Germany (DE) Royal National Hospital for Rheumatic Diseases GB United Kingdom (GB) University of East Anglia GB United Kingdom (GB) St Vincent's Hospital AU Australia (AU) University Hospitals Birmingham NHS Foundation Trust GB United Kingdom (GB) Oslo University Hospital / Oslo Universitetssykehus Rikshospitalet NO Norway (NO) Università degli Studi di Firenze / University of Florence IT Italy (IT) Hôpital général juif - Jewish General Hospital CA Canada (CA) Grigore T. Popa University of Medicine and Pharmacy / Universitatea de Medicină și Farmacie "Grigore T. Popa" (UMF Iași) RO Romania (RO) Radboud University Nijmegen NL Netherlands (NL) University of Zurich / Universität Zürich (UZH) CH Switzerland (CH) University of Pécs / Pécsi Tudományegyetem HU Hungary (HU) University of Oxford GB United Kingdom (GB) University of Paris 4 - Paris-Sorbonne / Université paris IV Paris-Sorbonne FR France (FR) Lund University / Lunds universitet SE Sweden (SE)

How to cite

APA:

Peytrignet, S., Denton, C.P., Lunt, M., Hesselstrand, R., Mouthon, L., Silman, A.,... Herrick, A.L. (2017). Disability, fatigue, pain and their associates in early diffuse cutaneous systemic sclerosis: the European Scleroderma Observational Study. Rheumatology. https://dx.doi.org/10.1093/rheumatology/kex410

MLA:

Peytrignet, Sebastien, et al. "Disability, fatigue, pain and their associates in early diffuse cutaneous systemic sclerosis: the European Scleroderma Observational Study." Rheumatology (2017).

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