title: Discontinuing disease-modifying therapy in progressive multiple sclerosis: can we stop what we have started?
abstract: Disease-modifying therapy is ineffective in disabled patients (Expanded Disability Status Scale [EDSS] > 6.5) with secondary progressive multiple sclerosis (MS) without relapses, or in primary progressive MS. Many patients with secondary progressive MS who initially had relapsing MS continue to use disease-modifying therapies. The enormous associated costs are a burden to health services. Regular assessment is recommended to guide discontinuation of disease-modifying therapies when no longer beneficial, but this is unavailable to many patients, particularly in rural areas. The objectives of this study are as follows: 1. To observe use of disease-modifying therapies in patients with progressive multiple sclerosis and EDSS > 6.5. 2. To examine approaches used by a group of international MS experts to stopping-disease modifying therapies in patients with secondary progressive MS without relapses. During an epidemiological study in three regions of Ireland (southeast Dublin city, and Wexford and Donegal Counties), we recorded details of disease-modifying therapies in patients with progressive MS and EDSS > 6.5. An e-questionnaire was sent to 26 neurologists with expert knowledge of MS, asking them to share their approach to stopping disease-modifying therapies in patients with secondary progressive MS. Three hundred and thirty-six patients were studied: 88 from southeast Dublin, 99 from Wexford and 149 from Donegal. Forty-four had EDSS > 6.5: 12 were still using disease-modifying therapies. Of the surveyed neurologists, 15 made efforts to stop disease-modifying therapies in progressive multiple sclerosis, but most did not insist. A significant proportion (12 of 44 patients with progressive MS and EDSS > 6.5) was considered to be receiving therapy without benefit. Eleven of the 12 were from rural counties, reflecting poorer access to neurology services. The costs of disease-modifying therapies in this group (>170,000 euro yearly) could be re-directed towards development of neurology services to optimize their management.
authors.affiliation: St Vincent's University Hospital, Neurology, Dublin, Republic of Ireland. roisin.lonergan@st-vincents.ie
authors.forename: Roisín
authors.initials: R
authors.lastname: Lonergan
authors.forename: Katie
authors.initials: K
authors.lastname: Kinsella
authors.forename: Marguerite
authors.initials: M
authors.lastname: Duggan
authors.forename: Sinead
authors.initials: S
authors.lastname: Jordan
authors.forename: Michael
authors.initials: M
authors.lastname: Hutchinson
authors.forename: Niall
authors.initials: N
authors.lastname: Tubridy
mesh_terms: D000328:Adult; D017046:Cost Savings; D003362:Cost-Benefit Analysis; D004185:Disability Evaluation; D004334:Drug Administration Schedule; D016527:Drug Costs; D019983:Guideline Adherence; D006801:Humans; D007166:Immunosuppressive Agents / Q000008:administration & dosage* / Q000191:economics; D007494:Ireland / Q000453:epidemiology; D018447:Medical Futility; D008875:Middle Aged; D020528:Multiple Sclerosis, Chronic Progressive / Q000175:diagnosis / Q000188:drug therapy* / Q000191:economics / Q000453:epidemiology; D009462:Neurology / Q000191:economics; D017410:Practice Guidelines as Topic; D010818:Practice Patterns, Physicians' / Q000191:economics; D019035:Rural Health Services; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D017211:Treatment Failure; D019037:Urban Health Services
chemical_list: D007166:Immunosuppressive Agents