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Ann Rheum Dis. 2018 Jul;77(7):1032-1038. doi: 10.1136/annrheumdis-2017-212412. Epub 2018 Feb 20.

Common measure of quality of life for people with systemic sclerosis across seven European countries: a cross-sectional study.

Author information

1
Academic Rheumatology Unit, University Hospitals Bristol NHS Foundation Trust, Bristol, UK.
2
Department of Nursing and Midwifery, University of the West of England, Bristol, UK.
3
Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, Leeds, UK.
4
NIHR Leeds Biomedical Research Centre, Leeds, UK.
5
Rheumatology A Department, Cochin Hospital, Paris Descartes University, Paris, France.
6
Department of Rheumatology and Clinical Immunology, Justus-Liebig University Giessen, Bad Nauheim, Germany.
7
Rheumatology Department, Hospital General Hospitalet-Moisès Broggi, Sant Joan Despí, Spain.
8
Department of Rheumatology, Lund University, Lund, Sweden.
9
Department of Experimental Medicine, University of Florence, Florence, Italy.
10
Department of Geriatric Medicine, Division of Rheumatology, Azienda Ospedaliero-Universitaria Careggi (AOUC), Florence, Italy.
11
Department of Rheumatology and Immunology, St. Josef Hospital, Wuppertal, Germany.
12
Department of Integrated Medical Care, Medical University of Bialystok, Bialystok, Poland.
13
Department of Foreign Languages, Medical University of Bialystok, Bialystok, Poland.
14
Department of Rheumatology and Internal Diseases, Medical University of Bialystok, Bialystok, Poland.

Abstract

OBJECTIVES:

The aim of this study was to adapt the Systemic Sclerosis Quality of Life Questionnaire (SScQoL) into six European cultures and validate it as a common measure of quality of life in systemic sclerosis (SSc).

METHODS:

This was a seven-country (Germany, France, Italy, Poland, Spain, Sweden and UK) cross-sectional study. A forward-backward translation process was used to adapt the English SScQoL into target languages. SScQoL was completed by patients with SSc, then data were validated against the Rasch model. To correct local response dependency, items were grouped into the following subscales: function, emotion, sleep, social and pain and reanalysed for fit to the model, unidimensionality and cross-cultural equivalence.

RESULTS:

The adaptation of the SScQoL was seamless in all countries except Germany. Cross-cultural validation included 1080 patients with a mean age 58.0 years (SD 13.9) and 87% were women. Local dependency was evident in individual country data. Grouping items into testlets corrected the local dependency in most country specific data. Fit to the model, reliability and unidimensionality was achieved in six-country data after cross-cultural adjustment for Italy in the social subscale. The SScQoL was then calibrated into an interval level scale.

CONCLUSION:

The individual SScQoL items have translated well into five languages and overall, the scale maintained its construct validity, working well as a five-subscale questionnaire. Measures of quality of life in SSc can be directly compared across five countries (France, Poland Spain, Sweden and UK). Data from Italy are also comparable with the other five countries although require an adjustment.

KEYWORDS:

health services research; outcomes research; patient perspective; quality of life; systemic sclerosis

PMID:
29463517
PMCID:
PMC6029637
DOI:
10.1136/annrheumdis-2017-212412
[Indexed for MEDLINE]
Free PMC Article

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