Peytrignet, Sebastien, Denton, Christopher P., Lunt, Mark ORCID: 0000-0002-2391-5575, Hesselstrand, Roger, Mouthon, Luc, Silman, Alan ORCID: 0000-0001-8426-8925, Pan, Xiaoyan, Brown, Edith, Czirjak, Laszlo, Distler, Jorg H. W., Distler, Oliver ORCID: 0000-0002-0546-8310, Fligelstone, Kim, Gregory, William J., Ochiel, Rachel, Vonk, Madelon, Ancuta, Codrina, Ong, Voon H., Farge, Dominique, Hudson, Marie, Matucci-Cerinic, Marco, Balbir-Gurman, Alexandra, Midtvedt, Oyvind, Jordan, Alison C., Stevens, Wendy, Moinzadeh, Pia, Hall, Frances C., Agard, Christian, Anderson, Marina E., Diot, Elisabeth, Madhok, Rajan, Akil, Mohammed, Buch, Maya H., Chung, Lorinda, Damjanov, Nemanja, Gunawardena, Harsha, Lanyon, Peter ORCID: 0000-0002-9855-6802, Ahmad, Yasmeen, Chakravarty, Kuntal, Jacobsen, Soren ORCID: 0000-0002-5654-4993, MacGregor, Alexander J., McHugh, Neil, Muller-Ladner, Ulf, Riemekasten, Gabriela, Becker, Michael, Roddy, Janet, Carreira, Patricia E., Fauchais, Anne Laure, Hachulla, Eric, Hamilton, Jennifer, Inanc, Murat, McLaren, John S., van Laar, Jacob M., Pathare, Sanjay, Proudman, Susanna, Rudin, Anna, Sahhar, Joanne, Coppere, Brigitte, Serratrice, Christine, Sheeran, Tom, Veale, Douglas J., Grange, Claire, Trad, Georges-Selim and Herrick, Ariane L. (2018). Disability, fatigue, pain and their associates in early diffuse cutaneous systemic sclerosis: the European Scleroderma Observational Study. RHEUMATOLOGY, 57 (2). S. 370 - 382. OXFORD: OXFORD UNIV PRESS. ISSN 1462-0332

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Abstract

Objectives. 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. Methods. 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. Results. 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 (rho = 0.34, P < 0.0001 and rho = 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 (rho = 0.84, P < 0.0001). Worsening HAQ-DI over 12 months was strongly associated with increasing mRSS (rho = 0.40, P < 0.0001), decreasing hand function (rho = 0.57, P < 0.0001) and increasing fatigue (rho = -0.53, P < 0.0001). Conclusion.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.

Item Type: Journal Article
Creators:
CreatorsEmailORCIDORCID Put Code
Peytrignet, SebastienUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Denton, Christopher P.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Lunt, MarkUNSPECIFIEDorcid.org/0000-0002-2391-5575UNSPECIFIED
Hesselstrand, RogerUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Mouthon, LucUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Silman, AlanUNSPECIFIEDorcid.org/0000-0001-8426-8925UNSPECIFIED
Pan, XiaoyanUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Brown, EdithUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Czirjak, LaszloUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Distler, Jorg H. W.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Distler, OliverUNSPECIFIEDorcid.org/0000-0002-0546-8310UNSPECIFIED
Fligelstone, KimUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Gregory, William J.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Ochiel, RachelUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Vonk, MadelonUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Ancuta, CodrinaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Ong, Voon H.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Farge, DominiqueUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Hudson, MarieUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Matucci-Cerinic, MarcoUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Balbir-Gurman, AlexandraUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Midtvedt, OyvindUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Jordan, Alison C.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Stevens, WendyUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Moinzadeh, PiaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Hall, Frances C.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Agard, ChristianUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Anderson, Marina E.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Diot, ElisabethUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Madhok, RajanUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Akil, MohammedUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Buch, Maya H.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Chung, LorindaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Damjanov, NemanjaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Gunawardena, HarshaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Lanyon, PeterUNSPECIFIEDorcid.org/0000-0002-9855-6802UNSPECIFIED
Ahmad, YasmeenUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Chakravarty, KuntalUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Jacobsen, SorenUNSPECIFIEDorcid.org/0000-0002-5654-4993UNSPECIFIED
MacGregor, Alexander J.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
McHugh, NeilUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Muller-Ladner, UlfUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Riemekasten, GabrielaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Becker, MichaelUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Roddy, JanetUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Carreira, Patricia E.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Fauchais, Anne LaureUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Hachulla, EricUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Hamilton, JenniferUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Inanc, MuratUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
McLaren, John S.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
van Laar, Jacob M.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Pathare, SanjayUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Proudman, SusannaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Rudin, AnnaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Sahhar, JoanneUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Coppere, BrigitteUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Serratrice, ChristineUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Sheeran, TomUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Veale, Douglas J.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Grange, ClaireUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Trad, Georges-SelimUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Herrick, Ariane L.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
URN: urn:nbn:de:hbz:38-197931
DOI: 10.1093/rheumatology/kex410
Journal or Publication Title: RHEUMATOLOGY
Volume: 57
Number: 2
Page Range: S. 370 - 382
Date: 2018
Publisher: OXFORD UNIV PRESS
Place of Publication: OXFORD
ISSN: 1462-0332
Language: English
Faculty: Unspecified
Divisions: Unspecified
Subjects: no entry
Uncontrolled Keywords:
KeywordsLanguage
QUALITY-OF-LIFE; HEALTH-ASSESSMENT QUESTIONNAIRE; RESEARCH GROUP REGISTRY; SKIN THICKNESS SCORE; DIGITAL ULCERS; OUTCOME MEASURES; CLINICAL-TRIALS; DISEASE; IMPACT; COHORTMultiple languages
RheumatologyMultiple languages
Refereed: Yes
URI: http://kups.ub.uni-koeln.de/id/eprint/19793

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