Long-Term Changes in Patient-Reported Outcome Measures in People With Multiple Sclerosis 55 Years and Older: Analysis From the New York State Multiple Sclerosis Consortium.
Jakimovski Dejan D, Kavak Katelyn S KS, Coyle Patricia K PK, Goodman Andrew D AD et al.
Patient-reported outcome measures (PROMs) are increasingly utilized in observational and regulated studies of people with multiple sclerosis (MS). However, the impact of aging on PROMs for people with MS remains largely unknown. This study explores the cross-sectional characteristics and longitudinal trajectories of PROMs to determine their ability to predict clinical progression in a large group of people with MS 55 years and older. Included in the analysis were people with MS enrolled in the New York State Multiple Sclerosis Consortium (NYSMSC), 55 years or older, with at least 3 clinical visits recorded in the consortium database. All people in the NYSMSC complete PROMs through the LIFEware questionnaire. Additional clinical measures were also collected. The percentage of people with MS who reported severe limitations within each of the LIFEware domains was compared at their baseline visit (≥ 55 years) and at the most recent follow-up visit (average follow-up of 8.3 years). Comparisons between people with MS with stable or increasing disability were also performed. Of 658 eligible people in the NYSMSC (mean age at most recent follow-up, 66.6 years), a greater percentage reported decreased ability since baseline in all physical PROMs domains (getting up from sofa, 38.4% to 48.8%, P < .001; standing for more than 30 minutes, 59.3% vs 66.9%, P < .001; and functional limitations in all extremities, P < .007). Contrarily, the group reported improvement in multiple psychosocial domains, including pessimism (P < .001), feeling tense (P < .001), feeling annoyed (P = .02), or having morbid thoughts (P = .018). People with increasing disability had significantly worse baseline physical PROMs when compared with people with stable MS. An increase in physical limitations does not necessarily contribute to a rise in psychosocial limitations. Instead, as people with MS age, they tend to report improvements in their mental health over time. PROMs can be a complementary predictive indicator of future disease progression as individuals with MS age.