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Development and val...
Development and validation of a patient-reported outcome measure for systemic sclerosis : the EULAR Systemic Sclerosis Impact of Disease (ScleroID) questionnaire
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- Becker, Mike O. (author)
- University Hospital of Zurich
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- Dobrota, Rucsandra (author)
- University Hospital of Zurich
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- Garaiman, Alexandru (author)
- University Hospital of Zurich
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- Debelak, Rudolf (author)
- Leipzig University,University of Zurich
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- Fligelstone, Kim (author)
- Scleroderma & Raynaud's UK
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- Tyrrell Kennedy, Ann (author)
- Federation of European Scleroderma Associations aisbl (FESCA)
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- Roennow, Annelise (author)
- Federation of European Scleroderma Associations aisbl (FESCA)
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- Allanore, Yannick (author)
- Paris Diderot University
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- Carreira, Patricia E. (author)
- 12 de Octubre University Hospital
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- Czirják, László (author)
- University of Pécs
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- Denton, Christopher P. (author)
- University College London
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- Hesselstrand, Roger (author)
- Lund University,Lunds universitet,Reumatologi och molekylär skelettbiologi,Sektion III,Institutionen för kliniska vetenskaper, Lund,Medicinska fakulteten,Forskargruppen för systemisk skleros, Lund,Forskargrupper vid Lunds universitet,Rheumatology,Section III,Department of Clinical Sciences, Lund,Faculty of Medicine,Lund Systemic Sclerosis Research Group,Lund University Research Groups
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- Sandqvist, Gunnel (author)
- Lund University,Lunds universitet,Reumatologi och molekylär skelettbiologi,Sektion III,Institutionen för kliniska vetenskaper, Lund,Medicinska fakulteten,Rheumatology,Section III,Department of Clinical Sciences, Lund,Faculty of Medicine
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- Kowal-Bielecka, Otylia (author)
- Medical University of Bialystok
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- Bruni, Cosimo (author)
- University of Florence
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- Matucci-Cerinic, Marco (author)
- San Raffaele Hospital,University of Florence
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- Mihai, Carina (author)
- University Hospital of Zurich,Carol Davila University of Medicine and Pharmacy
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- Gheorghiu, Ana Maria (author)
- Carol Davila University of Medicine and Pharmacy
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- Mueller-Ladner, Ulf (author)
- Justus Liebig University Giessen
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- Sexton, Joseph (author)
- Diakonhjemmet Hospital
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- Kvien, Tore K. (author)
- Diakonhjemmet Hospital
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- Heiberg, Turid (author)
- Oslo university hospital
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- Distler, Oliver (author)
- University Hospital of Zurich
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(creator_code:org_t)
- 2021-11-25
- 2022
- English.
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In: Annals of the Rheumatic Diseases. - : BMJ. - 1468-2060 .- 0003-4967. ; 81:4, s. 507-515
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https://ard.bmj.com/...
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Abstract
Subject headings
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- OBJECTIVES: Patient-reported outcome measures (PROMs) are important for clinical practice and research. Given the high unmet need, our aim was to develop a comprehensive PROM for systemic sclerosis (SSc), jointly with patient experts. METHODS: This European Alliance of Associations for Rheumatology (EULAR)-endorsed project involved 11 European SSc centres. Relevant health dimensions were chosen and prioritised by patients. The resulting Systemic Sclerosis Impact of Disease (ScleroID) questionnaire was subsequently weighted and validated by Outcome Measures in Rheumatology criteria in an observational cohort study, cross-sectionally and longitudinally. As comparators, SSc-Health Assessment Questionnaire (HAQ), EuroQol Five Dimensional (EQ-5D), Short Form-36 (SF-36) were included. RESULTS: Initially, 17 health dimensions were selected and prioritised. The top 10 health dimensions were selected for the ScleroID questionnaire. Importantly, Raynaud's phenomenon, impaired hand function, pain and fatigue had the highest patient-reported disease impact. The validation cohort study included 472 patients with a baseline visit, from which 109 had a test-retest reliability visit and 113 had a follow-up visit (85% female, 38% diffuse SSc, mean age 58 years, mean disease duration 9 years). The total ScleroID score showed strong Pearson correlation coefficients with comparators (SSc-HAQ, 0.73; Patient's global assessment, Visual Analogue Scale 0.77; HAQ-Disability Index, 0.62; SF-36 physical score, -0.62; each p<0.001). The internal consistency was strong: Cronbach's alpha was 0.87, similar to SSc-HAQ (0.88) and higher than EQ-5D (0.77). The ScleroID had excellent reliability and good sensitivity to change, superior to all comparators (intraclass correlation coefficient 0.84; standardised response mean 0.57). CONCLUSIONS: We have developed and validated the EULAR ScleroID, which is a novel, brief, disease-specific, patient-derived, disease impact PROM, suitable for research and clinical use in SSc.
Subject headings
- MEDICIN OCH HÄLSOVETENSKAP -- Klinisk medicin -- Reumatologi och inflammation (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Clinical Medicine -- Rheumatology and Autoimmunity (hsv//eng)
Keyword
- health care
- immune system diseases
- patient reported outcome measures
- quality indicators
- scleroderma
- systemic
Publication and Content Type
- art (subject category)
- ref (subject category)
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Becker, Mike O.
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Dobrota, Rucsand ...
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Garaiman, Alexan ...
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Debelak, Rudolf
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Fligelstone, Kim
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Tyrrell Kennedy, ...
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Roennow, Annelis ...
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Allanore, Yannic ...
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Carreira, Patric ...
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Czirják, László
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Denton, Christop ...
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Hesselstrand, Ro ...
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Sandqvist, Gunne ...
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Kowal-Bielecka, ...
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Bruni, Cosimo
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Matucci-Cerinic, ...
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Mihai, Carina
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Gheorghiu, Ana M ...
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Mueller-Ladner, ...
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Sexton, Joseph
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Kvien, Tore K.
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Heiberg, Turid
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Distler, Oliver
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- MEDICAL AND HEALTH SCIENCES
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MEDICAL AND HEAL ...
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and Clinical Medicin ...
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and Rheumatology and ...
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Annals of the Rh ...
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Lund University