[Patient-centered assessment of functional health in systemic sclerosis -- where are we now?]

Abstract

Self-administered patient-centered questionnaires have been shown to be practical, reliable and valid in terms of evaluating functional limitations in rheumatic diseases. In systemic sclerosis a modified version of the HAQ and condition-specific questionnaires have been used. The Health Assessment Questionnaire (HAQ) does not comprehensively cover functional limitations in patients with systemic sclerosis. Visual Analogue Scales added to the modified HAQ reflect general and organ-specific symptoms only to some extent. The Self-administered Systemic Sclerosis Questionnaire (SySQ) includes general, organ-specific and musculoskeletal symptoms with a focus on functional limitations of the upper and lower extremities. The SySQ has not been examined longitudinally nor has it been validated cross-culturally. WHO's International Classification of Functioning, Disability and Health (ICF) could serve as a future reference framework and common language in terms of the design of new disease-specific, patient-centered, comprehensive questionnaires for systemic sclerosis as well as in the further improvement of established questionnaires.