Economic burden of secondary progressive multiple sclerosis: DISCOVER study

Abstract

Background

To estimate the socioeconomic burden of people with secondary progressive multiple sclerosis (pwSPMS), considering direct health care, direct non-health care, and indirect costs, and to evaluate the relationship between costs and patients’ functional outcomes.

Methods

Observational, cross-sectional, multicenter study with retrospective real-life clinical practice data collection from pwSPMS visiting the neurology services of 34 hospitals during 2019–2020. Clinical data included Expanded Disability Status Scale scores, number of relapses, magnetic resonance imaging, disease-modifying treatment (DMT), symptoms, and comorbidities from 24 months before the study visit. Resource use and allied costs were collected 12 months before the study visit. Patient-reported outcomes, functional and cognitive scales were also collected.

Results

70% of pwSPMS used primary care services, and nearly 50% needed assistance in a daycare or rehabilitation center. Almost 60% of the participants were receiving DMT at the study visit, and 80% needed support for domestic/housekeeping tasks. More than 90% were inactive at work, with nearly 80% taking early retirement. The estimated total annual cost per pwSPMS in Spain was almost €41,500, of which more than 50% (€21,400) were indirect costs, followed by direct health care costs (30%, €11,300), and, finally, direct non-health care costs (about 20%, €8,800). Older patients with severe disabilities and worse functional outcomes incurred higher costs.

Conclusions

SPMS is a major burden on health care systems, patients, and society as a whole. Health care and societal policies should be aimed at improving the SPMS care pathway and minimizing patients’ funding of direct non-health care costs.

Trial registration

The trial is a non-interventional study. The NCC code is CBAF312AES01/NOV-EMS-2019–01.