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

Peytrignet, Sébastien; Denton, Christopher P.; Lunt, Mark; Hesselstrand, Roger LU ; Mouthon, Luc; Silman, Alan; Pan, Xiaoyan; Brown, Edith; Czirják, László and Distler, Jörg H.W., et al. (2018) In Rheumatology (United Kingdom) 57(2). p.370-381
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... (More)

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 (r = 0.34, P < 0.0001 and r = 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.

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published
subject
keywords
Disability, Early diffuse cutaneous systemic sclerosis, Fatigue, Hand function, Pain
in
Rheumatology (United Kingdom)
volume
57
issue
2
pages
12 pages
publisher
Oxford University Press
external identifiers
  • scopus:85041545966
ISSN
1462-0324
DOI
10.1093/rheumatology/kex410
language
English
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yes
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83ea9c36-b12b-4ceb-949f-1df6eaef521e
date added to LUP
2018-03-06 11:16:43
date last changed
2018-10-21 04:54:31
@article{83ea9c36-b12b-4ceb-949f-1df6eaef521e,
  abstract     = {<p>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 (r = 0.34, P &lt; 0.0001 and r = 0.35, P &lt; 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 &lt; 0.0001). Worsening HAQ-DI over 12 months was strongly associated with increasing mRSS (ρ = 0.40, P &lt; 0.0001), decreasing hand function (ρ = 0.57, P &lt; 0.0001) and increasing fatigue (ρ =-0.53, P &lt; 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.</p>},
  articleno    = {kex410},
  author       = {Peytrignet, Sébastien and Denton, Christopher P. and Lunt, Mark and Hesselstrand, Roger and Mouthon, Luc and Silman, Alan and Pan, Xiaoyan and Brown, Edith and Czirják, László and Distler, Jörg H.W. and Distler, Oliver and Fligelstone, Kim and Gregory, William J. and Ochiel, Rachel and Vonk, Madelon and Ancuţa, Codrina and Ong, Voon H. and Farge, Dominique and Hudson, Marie and Matucci-Cerinic, Marco and Balbir-Gurman, Alexandra and Midtvedt, Øyvind and Jordan, Alison C. and Stevens, Wendy and Moinzadeh, Pia and Hall, Frances C. and Agard, Christian and Anderson, Marina E. and Diot, Elisabeth and Madhok, Rajan and Akil, Mohammed and Buch, Maya H. and Chung, Lorinda and Damjanov, Nemanja and Gunawardena, Harsha and Lanyon, Peter and Ahmad, Yasmeen and Chakravarty, Kuntal and Jacobsen, Søren and MacGregor, Alexander J. and McHugh, Neil and Müller-Ladner, Ulf and Riemekasten, Gabriela and Becker, Michael and Roddy, Janet and Carreira, Patricia E. and Fauchais, Anne Laure and Hachulla, Eric and Hamilton, Jennifer and Inanç, Murat and McLaren, John S. and van Laar, Jacob M. and Pathare, Sanjay and Proudman, Susanna and Rudin, Anna and Sahhar, Joanne and Coppere, Brigitte and Serratrice, Christine and Sheeran, Tom and Veale, Douglas J. and Grange, Claire and Trad, Georges Selim and Herrick, Ariane L.},
  issn         = {1462-0324},
  keyword      = {Disability,Early diffuse cutaneous systemic sclerosis,Fatigue,Hand function,Pain},
  language     = {eng},
  month        = {02},
  number       = {2},
  pages        = {370--381},
  publisher    = {Oxford University Press},
  series       = {Rheumatology (United Kingdom)},
  title        = {Disability, fatigue, pain and their associates in early diffuse cutaneous systemic sclerosis : The European Scleroderma Observational Study},
  url          = {http://dx.doi.org/10.1093/rheumatology/kex410},
  volume       = {57},
  year         = {2018},
}