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.