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

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

Abstract Background Rare 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-identif...

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Bibliographic Details
Main Authors: Agnes Kocher, Mwidimi Ndosi, Kris Denhaerynck, Michael Simon, Andrew A. Dwyer, Oliver Distler, Kirsten Hoeper, Patrizia Künzler-Heule, Anthony C. Redmond, Peter M. Villiger, Ulrich A. Walker, Dunja Nicca
Format: Article
Language:English
Published: BMC 2021-08-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Health-related quality of life
Item response theory
Methodology
Patient-centered care
Patient reported outcome measures
Rare diseases
Online Access:https://doi.org/10.1186/s13023-021-01944-9

Internet

https://doi.org/10.1186/s13023-021-01944-9

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