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Degenerative neurological and neuromuscular disease
By Jongen PJ, Yaylali A, Kremer IEH and 5 others.
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To assess at population level long-term changes in disabilities and health-related quality of life (HRQoL) in persons with multiple sclerosis (PwMS) in the Netherlands. Patients and methods: A prospective web-based study in a real-world population-based self-enrolled cohort; 6-month assessments by means of the Multiple Sclerosis Impact Profile (MSIP) and Multiple Sclerosis Quality of Life-54 (MSQoL-54) questionnaires; Generalized Linear Mixed Models (GLMM) analysis; predetermined anchor points 5, 8 and 10 years follow-up.
Nation-wide 391 patients started (2011-2012), 272 participants were included in the MSIP and 267 in the MSQoL-54 analyses. Female 74%, mean (standard deviation) age 45 (11) years. Baseline Expanded Disability Status Scale scores: 58.9% 0.0-4.0, 35.5% 4.5-6.5, 5.6% >6.5. Baseline demographic and disease characteristics did not differ between participants with and without follow-up data. GLMM indicated that after 10 years disability related to Activities of Daily Living and Basic Movement Activities had increased. Conversely, at 5, 8 and 10 years an improvement was reported in disability related to Lack of Support from Environmental Factors, more specifically Professional Care and Assistance, and Social Security Services. The other MSIP disabilities and symptoms remained stable over time, as did the physical and mental MSQoL-54 scores.
Our findings indicate that in the Dutch MS population in the period 2011-2021 the limitations in activities of daily living and in basic movement activities worsened over time. The improved support from professional care, professional assistance and social security services may be related to the implementation of nation-wide decentralized legislation to support people with disabilities, and the emergence of MS-specific neurological and nursing care. These findings at population level regarding the long-term course of disabilities and HRQoL in PwMS in the Netherlands in the era of (high) efficacy disease-modifying drugs may be useful for policymakers, healthcare providers, and patient organizations.
Published in Degenerative neurological and neuromuscular disease. The abstract is shown as published and remains the work of its authors; read the full article at the source.
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