Cost of care for people with secondary progressive multiple sclerosis: baseline results from the MS-STAT2 study

Background. Most people with multiple sclerosis are likely to be affected by secondary progressive multiple sclerosis (SPMS), however there is a paucity of evidence on the cost of care for these people. We estimated cost to the healthcare system, patients’ out-of-pocket costs, cost of informal care and productivity loss. Methods. We used participant-level data from a large UK-based study. Participants completed a questionnaire on healthcare resource use, employment, out-of-pocket costs and help from unpaid carers. Unit costs were obtained from published sources. Six-month costs were reported in 2020/21 Great British Pounds (GBP). Results. The analytic sample comprised 960 participants. 71% of participants had an EDSS score ≥ 6.0. Participants had MS for 23 years (SD 9.4) on average and had been diagnosed with SPMS for 7 years (SD 4.9) on average. Over 6 months the mean cost to healthcare system was £1,738 (95% CI £1,432 to £2,045), whereas from the wider perspective it was £8,379 (95% CI £7,776 to £8,981). When exploring the effect of COVID-19 pandemic, the adjusted difference between pre-pandemic and COVID-19 group was -£396 (95% CI -£1,757 to £965). Discussion. People with SPMS and their carers contribute almost 3.5 times as much to their care compared to the healthcare system. The COVID-19 pandemic led to the decrease in the use of services that require in-person attendance. It is important to consider high informal care costs when working on new policies and interventions for people with SPMS.Clinical trial registration details: NCT03387670; ISRCTN82598726, EudraCT N2017-003328-56