Author(s): Moore A.; Hughes D.A.; Young C.A.
Source: Value in Health; 2019
Publication Date: 2019
Publication Type(s): Article
Abstract:Background: Motor neurone disease (MND) places a significant burden on patients, their carers, and healthcare systems. Objective(s): To estimate health utilities and costs of MND within the UK setting. Method(s): 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 EuroQoL (EQ)-5D-5L, EQ-5D-visual analogue scale, Amyotrophic Lateral Sclerosis Utility Index, and the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised. Clinical staging was based on the Kings and Milano-Torino (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. Result(s): 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 1096 (757-1240) in Kings stage 1, to 0.50 (0.45-0.54) and 3311 (2666-4151) in stage 4, respectively. The changes by MiToS stages were from 0.71 (0.69-0.73) and 1115 (937-1130) in MiToS stage 0, to 0.25 (0.07-0.42) and 2899 (2190-3840) in stage 2. Kings stages 3 and 4 and MiToS stages 1 and 2, respectively, were significant in explaining variability in total costs. Conclusion(s): 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.
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