Background: Motor Neurone Disease (MND) places a significant burden on patients, their carers and healthcare systems. However, there is limited information on health utilities and costs within a United Kingdom setting.
Methods: Patients with MND, recruited via 22 regional clinics, completed a postal questionnaire of a cost and quality of life survey. Health outcome assessment included the EQ-5D-5L, EQ-VAS, ALS Utility Index and the Amyotrophic Lateral Sclerosis Functional Rating Scale - Revised. Clinical staging was based on the Kings and MiToS systems. The questionnaire asked about patients’ use of primary, secondary and community care services in the previous 3-months. Variability in total costs was examined using regression models.
Results: 595 patients were included in the health utility analysis, of whom 584 patients also completed a resource use questionnaire. Mean health utility decreased and costs increased between consecutive Kings stages, from 0.76 (95%CI 0.71, 0.80) and £1,096 (£757, £1,240) in Kings stage 1, to 0.50 (0.45, 0.54) and £3,311 (£2,666, £4,151) in stage 4, respectively. The changes by MiToS stages, were from 0.71 (0.69, 0.73) and £1,115 (£937, £1,130) in MiToS stage 0, to 0.25 (0.07, 0.42) and £2,899 (£2,190, £3,840) in stage 2. Kings stages 3 and 4, and MiToS Stages 1 and 2, respectively, were significant in explaining variability in total costs.
Conclusions: The impact of MND on health utilities and costs differs by disease severity. The data provided here can be used in cost-effectiveness analyses and to inform decision-making regarding healthcare provision for people with MND.