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 KocherMwidimi NdosiKris DenhaerynckMichael SimonAndrew A DwyerOliver DistlerKirsten HoeperPatrizia Künzler-HeuleAnthony C RedmondPeter M VilligerUlrich A WalkerDunja Nicca

Published in: Orphanet journal of rare diseases (2021)

The 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.

Keyphrases

systemic sclerosis
psychometric properties
patient reported outcomes
interstitial lung disease
electronic health record
big data
machine learning
rheumatoid arthritis
artificial intelligence
deep learning
data analysis