Patients had a significantly worse perception of multiple sclerosis as a malignant disease. We conclude that patients were willing to accept a higher risk of PML than neurologists. Coherent with their perception of risks and benefits, patients were also more willing to continue treatment. Open information about treatment-related risks is appreciated and might support shared decision making.
Background
Patient‐reported outcome measurements (PROMS) have been proposed sensitive outcome parameters in multiple sclerosis (MS). In this study, we assessed a German version of the Multiple Sclerosis Impact Scale (MSIS‐29) and a revised version of the Hamburg Quality of Life Questionnaire in Multiple Sclerosis (HAQUAMS) in comparison with rater‐ and physician‐based tools.
Methods
Consecutive MS patients (n = 117) of the MS outpatient unit were included. In addition to MSIS‐29 and HAQUAMS, the following parameters were obtained: Expanded Disability Status Scale (EDSS) and modified Multiple Sclerosis Functional Composite (MSFC) [9‐hole peg test (9HPT), 25‐foot walk test and symbol digit modalities test]. We investigated validity, internal consistency and test–retest reliability as well as correlation between these measures.
Results
Internal consistency (Cronbach's α ≤ 0.96) and test–retest coefficients (ICC ≤ 0.87) of both scales were high and satisfied psychometric standards. Convergent and discriminant validity was supported by direction, magnitude and pattern of correlation with other rater‐based measures depending on the functional subdomain. Both MSIS‐29 and HAQUAMS correlated with EDSS (ρ = 0.55 vs 0.62), but stronger correlation was found between MSIS‐29 and HAQUAMS total score (ρ = 0.90). Both scales distinguished between patient groups of varied disease severity and cognitive impairment.
Conclusion
Patient‐reported outcome measurements as MSIS‐29 and HAQUAMS seem to be valid instruments to detect different impairment levels in comparison with traditional rater‐based instruments like EDSS or MSFC.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.