Multiple Sclerosis Health Utilities Decline With Disability

Multiple sclerosis health utilities decline as disability increases, with a steeper drop in progressive forms. The same pattern holds for costs in a UK cohort study from Bangor University and the University of Liverpool, working with clinicians from Walton NHS Foundation Trust. Yankier Pijeira Perez, Carolyn A. Young, Roger J. Mills and Dyfrig A. Hughes report the results in a pre-proof article accepted by Value in Health. Data came from 5,772 patients who returned utility surveys.

How the study was run

The authors used data from the Trajectories of Outcomes in Neurological Conditions (TONiC) UK cohort, which recruited people from 33 collaborating sites between May 2013 and December 2019. Of 10,031 patients invited, 5,913 (58.9%) returned their questionnaires. Respondents completed the EQ-5D-5L, which the authors mapped to the UK EQ-5D-3L value set. They also completed the EQ visual analogue scale and a resource-use questionnaire covering the previous three months.

Patients were grouped into four bands by Expanded Disability Status Scale (EDSS) score: fully ambulatory (EDSS 0-4.0), mobile with aids if needed (EDSS 4.5-6.5), unable to walk beyond 5 metres even with aid (EDSS 7.0-7.5), and chair or bed bound (EDSS 8.0-9.5). The sample was 73.8% female, with a mean age of 50.6 years. Most respondents had relapsing-remitting MS (RRMS, 62.0%), and 22.6% had secondary progressive MS (SPMS).

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Multiple sclerosis health utilities fall with disability and progressive MS

Mean utility across all respondents was 0.576 (0.568, 0.583), and the mean EQ VAS score was 65. Utilities were highest for RRMS at 0.667 (0.659, 0.675) and lowest for SPMS at 0.385 (0.368, 0.402). Table 2 of the paper sets out utility by MS type and EDSS band.

Source: Pijeira Perez et al., Health Utilities and Costs for Multiple Sclerosis, Value in Health (2026), pre-proof, Table 2 (utility rows reproduced; interaction rows omitted).

Within the same disability band, progressive forms scored lower. People in the EDSS 0-4.0 band had a mean utility of 0.738 (0.730, 0.745) with RRMS, against 0.618 (0.573, 0.657) with SPMS. In the 8.0-9.5 band the mean was 0.125. Mobility was the most affected EQ-5D-5L domain: 23.1% of participants reported severe or extreme mobility problems. Among people in the 8.0-9.5 band, 77.0% reported extreme mobility problems. The generalised linear model found that progressive MS and higher EDSS bands were each associated with significantly lower utility.

Costs are driven by medicines and hospital care

Mean MS-related cost over three months was £2,807 (£2,665, £2,974). It ranged from £809 (£563, £1,188) for people with PPMS in the 8.0-9.5 band to £9,390 (£4,601, £23,101) for people with REMS in the 7.0-7.5 band. Medicines made up 76% of total costs and hospital and emergency care 20%. Disease-modifying therapies accounted for 89.5% of medication costs.

Table 3 of the paper shows costs by MS type. People with REMS had the highest mean cost of any group, at £5,624, and also reported above-average utility (0.603). The authors note that REMS patients reported high costs for medicines along with other resources such as emergency and hospital attendances and tests.

Source: Pijeira Perez et al., Health Utilities and Costs for Multiple Sclerosis, Value in Health (2026), pre-proof, Table 3 (MS-type rows reproduced; EDSS and interaction rows omitted).

Costs and utilities did not move in lockstep. The two-part model found that age and progressive MS were linked to a lower probability of incurring any cost. Having REMS or an EDSS score in the 4.5-6.5 band was linked to a higher probability. Among those with costs, male sex, REMS and EDSS 4.0-4.5 were linked to higher amounts. Age, sex, MS type, EDSS band and some interactions explained variation in both utilities and costs.

Why the numbers matter for economic models

Economic models of MS are mostly Markov models, and their health states are usually defined by EDSS bands. Those models need utility and cost inputs for each state. Earlier cohort studies mostly covered RRMS, PPMS and SPMS. Rapidly evolving MS (REMS) is less common and is often grouped with RRMS, so its values are rarely reported on their own. The authors say their analysis is the first to consider costs and utilities for REMS separately, and they present their values grouped by MS type, EDSS band and their interaction so that modellers can use them directly.

UK decisions on MS treatments have long turned on cost-effectiveness. NICE judged interferon beta and glatiramer acetate not cost-effective, and it did not recommend fampridine for NHS England, although NHS Wales and NHS Scotland approved it. Access restrictions on MS drugs also appear in other markets, such as Portugal’s decision on Briumvi. For modellers, the study’s main value is its evidence that EDSS bands separate utility and cost levels well, which supports using them as model health states. The authors state that the data can inform cost-effectiveness analyses for future MS treatments. For background on how cost-effectiveness models of MS are built, see this review of disease-modifying drugs in relapsing-remitting MS.

Source: Pijeira Perez YP, Young CA, Mills RJ, Hughes DA, Health Utilities and Costs for Multiple Sclerosis, Value in Health (2026), doi:10.1016/j.jval.2026.08.015.