eprintid: 10040272 rev_number: 36 eprint_status: archive userid: 608 dir: disk0/10/04/02/72 datestamp: 2017-12-19 12:06:13 lastmod: 2021-09-29 22:31:34 status_changed: 2017-12-19 12:06:13 type: article metadata_visibility: show creators_name: Peytrignet, S creators_name: Denton, CP creators_name: Lunt, M creators_name: Hesselstrand, R creators_name: Mouthon, L creators_name: Silman, A creators_name: Pan, X creators_name: Brown, E creators_name: Czirják, L creators_name: Distler, JHW creators_name: Distler, O creators_name: Fligelstone, K creators_name: Gregory, WJ creators_name: Ochiel, R creators_name: Vonk, M creators_name: Ancuta, C creators_name: Ong, VH creators_name: Farge, D creators_name: Hudson, M creators_name: Matucci-Cerinic, M creators_name: Balbir-Gurman, A creators_name: Midtvedt, Ø creators_name: Jordan, AC creators_name: Stevens, W creators_name: Moinzadeh, P creators_name: Hall, FC creators_name: Agard, C creators_name: Anderson, ME creators_name: Diot, E creators_name: Madhok, R creators_name: Akil, M creators_name: Buch, MH creators_name: Chung, L creators_name: Damjanov, N creators_name: Gunawardena, H creators_name: Lanyon, P creators_name: Ahmad, Y creators_name: Chakravarty, K creators_name: Jacobsen, S creators_name: MacGregor, AJ creators_name: McHugh, N creators_name: Müller-Ladner, U creators_name: Riemekasten, G creators_name: Becker, M creators_name: Roddy, J creators_name: Carreira, PE creators_name: Fauchais, AL creators_name: Hachulla, E creators_name: Hamilton, J creators_name: Inanç, M creators_name: McLaren, JS creators_name: van Laar, JM creators_name: Pathare, S creators_name: Proudman, S creators_name: Rudin, A creators_name: Sahhar, J creators_name: Coppere, B creators_name: Serratrice, C creators_name: Sheeran, T creators_name: Veale, DJ creators_name: Grange, C creators_name: Trad, G-S creators_name: Herrick, AL title: Disability, fatigue, pain and their associates in early diffuse cutaneous systemic sclerosis: the European Scleroderma Observational Study ispublished: inpress divisions: UCL divisions: B02 divisions: C10 divisions: D17 divisions: G90 keywords: Disability, early diffuse cutaneous systemic sclerosis, fatigue, hand function, pain note: This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact journals.permissions@oup.com 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 (ρ = 0.34, P < 0.0001 and ρ = 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 (ρ = 0.84, P < 0.0001). Worsening HAQ-DI over 12 months was strongly associated with increasing mRSS (ρ = 0.40, P < 0.0001), decreasing hand function (ρ = 0.57, P < 0.0001) and increasing fatigue (ρ = -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. date: 2017-11-30 date_type: published official_url: https://doi.org/10.1093/rheumatology/kex410 oa_status: green full_text_type: pub language: eng primo: open primo_central: open_green article_type_text: Journal Article verified: verified_manual elements_id: 1517934 doi: 10.1093/rheumatology/kex410 pii: 4675178 lyricists_name: Denton, Christopher lyricists_name: Ong, Voon lyricists_id: CPDEN87 lyricists_id: VONGX45 actors_name: Stacey, Thomas actors_id: TSSTA20 actors_role: owner full_text_status: public publication: Rheumatology article_number: kex410 event_location: England issn: 1462-0332 citation: Peytrignet, S; Denton, CP; Lunt, M; Hesselstrand, R; Mouthon, L; Silman, A; Pan, X; ... Herrick, AL; + view all <#> Peytrignet, S; Denton, CP; Lunt, M; Hesselstrand, R; Mouthon, L; Silman, A; Pan, X; Brown, E; Czirják, L; Distler, JHW; 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, Ø; 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; Müller-Ladner, U; Riemekasten, G; Becker, M; Roddy, J; Carreira, PE; Fauchais, AL; Hachulla, E; Hamilton, J; Inanç, 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, G-S; Herrick, AL; - view fewer <#> (2017) Disability, fatigue, pain and their associates in early diffuse cutaneous systemic sclerosis: the European Scleroderma Observational Study. Rheumatology , Article kex410. 10.1093/rheumatology/kex410 <https://doi.org/10.1093/rheumatology%2Fkex410>. (In press). Green open access document_url: https://discovery.ucl.ac.uk/id/eprint/10040272/7/kex410.pdf