Disability, fatigue, pain and their associates in early diffuse cutaneous systemic sclerosis: the European Scleroderma Observational Study.
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Peytrignet Sébastien, Denton Christopher P, Lunt Mark, Hesselstrand Roger, Mouthon Luc, Silman Alan, Pan Xiaoyan, Brown Edith, Czirják László, Distler Jörg H W, Distler Oliver, 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 Øyvind, 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, Ahmad Yasmeen, Chakravarty Kuntal, Jacobsen Søren, MacGregor Alexander J, McHugh Neil, Müller-Ladner Ulf, Riemekasten Gabriela, Becker Michael, Roddy Janet, Carreira Patricia E, Fauchais Anne Laure, Hachulla Eric, Hamilton Jennifer, Inanç 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, Herrick Ariane L
Аннотация
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.