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-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.

Methods

The instrument validation study involved revising the German SScQoL response structure, cognitive debriefing with patie

SUBMITTER: Kocher A 

PROVIDER: S-EPMC8351336 | biostudies-literature | 2021 Aug

REPOSITORIES: biostudies-literature