Orphanet Journal of Rare Diseases (Dec 2023)

Impact of specialist ataxia centres on health service resource utilisation and costs across Europe: cross-sectional survey

  • Stephen Morris,
  • Julie Vallortigara,
  • Julie Greenfield,
  • Barry Hunt,
  • Deborah Hoffman,
  • Carola Reinhard,
  • Holm Graessner,
  • Antonio Federico,
  • Vinciane Quoidbach,
  • Paola Giunti

DOI
https://doi.org/10.1186/s13023-023-02971-4
Journal volume & issue
Vol. 18, no. 1
pp. 1 – 8

Abstract

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Abstract Background Little is known about the costs of treating ataxia and whether treatment at a specialist ataxia centre affects the cost of care. The aim of this study was to investigate whether patients who attended specialist ataxia centres in three European countries reported differences in their health care use and costs compared with patients who did not attend a specialist ataxia centre. We compared mean resource use and health service costs per patient affected by ataxia in the United Kingdom, Italy and Germany over a 12-month period. Data were obtained from a survey distributed to people with ataxia in the three countries. We compared mean resource use for each contact type and costs, stratifying patients by whether they were currently attending a specialist ataxia centre or had never attended one. Results Responses were received from 181 patients from the United Kingdom, 96 from Italy and 43 from Germany. Differences in the numbers of contacts for most types of health service use between the specialist ataxia centre and non-specialist ataxia centre groups were non-significant. In the United Kingdom the mean total cost per patient was €2209 for non-specialist ataxia centre patients and €1813 for specialist ataxia centre patients (P = 0.59). In Italy these figures were €2126 and €1971, respectively (P = 0.84). In Germany they were €2431 and €4087, respectively (P = 0.19). Inpatient stays made the largest contribution to total costs. Conclusions Within each country, resource use and costs were broadly similar for specialist ataxia centre and non-specialist ataxia centre groups. There were differences between countries in terms of health care contacts and costs.

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