Evidence map›Paper›PMID 34372892›Full record

ArticleOrphanet journal of rare diseases2021

A rare disease patient-reported outcome measure: revision and validation of the German version of the Systemic Sclerosis Quality of Life Questionnaire (SScQoL) using the Rasch model.

Agnes Kocher, Mwidimi Ndosi, Kris Denhaerynck, Michael Simon, Andrew A Dwyer, Oliver Distler, Kirsten Hoeper, Patrizia Künzler-Heule, Anthony C Redmond, Peter M Villiger and 2 more

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Article in Orphanet journal of rare diseases, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.

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6citing papers in PubMed
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1 · What the graph read from it

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3 · Its place in the literature

Who cites it

6 citing papers in PubMed.

  1. Review
  2. Nursing's Role in Advancing Care for Rare Genetic Diseases.The Nursing clinics of North America · 2025
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4 · The record

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5 · Who and what money

Authors and funding

12 authors.

Agnes KocherInstitute of Nursing Science (INS), Department Public Health (DPH), Faculty of Medicine, University of Basel, Basel, Switzerland.
Mwidimi NdosiSchool of Health and Social Wellbeing, University of the West of England, Bristol, UK.
Kris DenhaerynckInstitute of Nursing Science (INS), Department Public Health (DPH), Faculty of Medicine, University of Basel, Basel, Switzerland.
Michael SimonInstitute of Nursing Science (INS), Department Public Health (DPH), Faculty of Medicine, University of Basel, Basel, Switzerland.
Andrew A DwyerBoston College, Connell School of Nursing, Chestnut Hill, MA, USA.
Oliver DistlerDepartment of Rheumatology, University Hospital Zurich, University of Zurich, Zurich, Switzerland.
Kirsten HoeperHannover Medical School, Department, Rheumatology and Immunology, Hannover, Germany.
Patrizia Künzler-HeuleInstitute of Nursing Science (INS), Department Public Health (DPH), Faculty of Medicine, University of Basel, Basel, Switzerland.
Anthony C RedmondLeeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, Leeds, UK.
Peter M VilligerDepartment of Rheumatology, Immunology and Allergology, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland.
Ulrich A WalkerDepartment of Rheumatology, University Hospital Basel, Basel, Switzerland.
Dunja NiccaInstitute of Nursing Science (INS), Department Public Health (DPH), Faculty of Medicine, University of Basel, Basel, Switzerland. dunja.nicca@unibas.ch.ORCID 0000-0002-4133-8177

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundRare disease patient-reported outcome measures (PROMs) require linguistic adaptation to overcome the challenge of geographically dispersed patient populations. Importantly, PROMs such as health-related quality of life (HRQoL) should accurately capture responses to patient-identified concerns. The Systemic Sclerosis Quality of Life Questionnaire (SScQoL) is a 29-item tool validated in six languages. Previous evaluation of the German version revealed problems with dichotomous responses. This study aimed to revise the German SScQoL, extend the response structure, and evaluate content and construct validity, reliability and unidimensionality.

methodsThe instrument validation study involved revising the German SScQoL response structure, cognitive debriefing with patients and validation using Rasch analysis. The revised SScQoL was completed by Swiss-German-speaking patients with SSc within the Swiss MANagement Of Systemic Sclerosis (MANOSS) study. Rasch analysis was employed to test the validity, reliability and unidimensionality of the revised instrument.

resultsBased on cognitive debriefing with patients (n = 6) dichotomous items were extended to a polytomous 4-point response structure. A total of 78 patients completed the revised SScQoL. Initial analysis of the 29 items suggested the scale lacked fit to the model (χ

conclusionsThe revised German SScQoL has a 4-point response structure and is a valid, reliable measure. Rasch analysis is useful for validating continuous response structure of quality of life measures. Further evaluation of measurement equivalence with other German-speaking cultures is required for multinational comparisons and data pooling.

Indexed as

Quality of LifeScleroderma, SystemicHumansLanguagePatient Reported Outcome MeasuresPsychometricsRare DiseasesReproducibility of ResultsSurveys and QuestionnairesHealth-related quality of lifeItem response theoryMethodologyPatient-centered carePatient reported outcome measuresRare diseasesRasch analysisRheumatologySclerodermaSystemic sclerosisValidation study

Identifiers

PMID34372892
PMCPMC8351336

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