OBJECTIVES: Multiple sclerosis (MS) has socioeconomic impacts beyond direct medical costs, including investment in assistive equipment, caregiver burden, and workforce participation. This study evaluated the broad impact of MS disease progression on societal costs using routinely collected data from the German NTD MS registry.

METHODS: This was a cross-sectional cohort study of 7,286 MS patients from >60 NTD centers. Eligible patients had a visit in 2019 during which a clinician assessed MS disability using the Expanded Disability Status Scale (EDSS). A second visit during the preceding year was required to ensure adequate capture of patient characteristics including, EDSS, sociodemographics, clinical history, and healthcare utilisation. Analyses were conducted from the societal perspective including direct medical and non-medical costs, and indirect costs. Costs associated with these variables were derived from public sources.

RESULTS: Included MS patients were predominantly female (72%), Relapsing-Remitting MS patients (87%), treated with disease modifying therapies (DMTs) (77%), and a mean age of 47 years. As MS disability progressed, reflected in increasing EDSS, healthcare utilization increased. Investments in equipment showed that 15.5% required walking aids, 9.5% wheelchairs, 4.9% house modifications and 3.3% house lifts, and use increased significantly from EDSS 4 onwards. Additionally 6.1% of patients required family care and 18.9% domestic aid, which was more prevalent at higher EDSS levels. Finally, of those of employment age (n=6261), the majority (53.5%) were not employed full time. Furthermore, 9.8% had at least one-day of MS-related sick leave and 20.3% received an invalidity pension. Average total socioeconomic costs in 2019, excluding or including DMTs, increased from €5702 or €18971 at EDSS 0-3, to €25977 or €36451 at EDSS 3.5-6.5, to €53821 or €58748 at EDSS 7-9.5.

CONCLUSIONS: This study confirms EDSS-related increasing socioeconomic costs with MS disease progression. From a socioeconomic perspective, delaying disability progression may have benefits to patients but also to society.