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