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.

Authors with CRIS profile

Involved external institutions

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