OBJECTIVES: Costs associated with chronic conditions extend beyond direct healthcare costs. We explored the societal costs of multiple sclerosis (MS) in England and the stakeholders affected during the course of an illustrative ‘patient cost journey’.

METHODS: Three archetypes were developed, representing patients with MS with varying characteristics (e.g. age, employment status, income, disability level). Over a 20-year time horizon, patients were assumed to undergo disease progression at varying rates. Desk research was conducted to identify stakeholders and budgets impacted by MS-related societal costs. A targeted literature review was conducted in Medline to identify publications reporting societal costs of MS, supplemented by hand-searching of relevant reference lists and websites.

RESULTS: Nine relevant studies were identified in the targeted literature review and were used alongside desk research results to inform cost inputs. Cost categories included: employer, central government income (revenue losses), patient/caregiver, National Insurance contributions (revenue losses), National Insurance Fund (payments), and local authority. Estimated costs are presented for one of the three archetypes; a patient aged 30 years in the early stages of MS with difficulty adhering to injectable therapies, who progresses to higher disability levels at an early stage of their disease. Societal costs are estimated at £2,635 in Year 5, increasing to £59,375 in Year 20. The distribution of costs changes over time. At Year 5, with few relapses and minimal disability progression, costs largely fall on employers (lost productivity [£2,122]). At 20 years, increased disability, care requirements, early retirement, and home modifications result in higher costs to the patient/caregiver (£28,610), National Insurance contributions (revenue losses; £6,183) and Fund (payments; £17,901), local authority (£3,261), and central government tax revenue (£3,419).

CONCLUSIONS: Societal costs are an often under-appreciated aspect of chronic diseases; illustrative ‘patient cost journeys’ can be used to demonstrate and visualise these costs, highlighting the multiple stakeholders upon whom they fall.