ArticleBMJ open2024
Comparison of specialist ataxia centres with non-specialist services in terms of treatment, care, health services resource utilisation and costs in the UK using patient-reported data.
Article in BMJ open, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Who cites it
4 citing papers in PubMed.
- Ataxia patient care pathway and associated healthcare costs in Italy: a cross-sectional survey.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2026Article
- Friedreich's ataxia patient pathway in Europe.Frontiers in health services · 2026Article
- Hereditary Ataxias in Argentina.Cerebellum (London, England) · 2025Review
- Article
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Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesThis study aims to assess the patient-reported benefits and the costs of coordinated care and multidisciplinary care at specialist ataxia centres (SACs) in the UK compared with care delivered in standard neurological clinics.
designA patient survey was distributed between March and May 2019 to patients with ataxia or carers of patients with ataxia through the Charity Ataxia UK's mailing list, website, magazine and social media to gather information about the diagnosis, management of the ataxias in SAC and non-specialist settings, utilisation of various healthcare services and patients' satisfaction. We compared mean resource use for each contact type and health service costs per patient, stratifying patients by whether they were currently attending a SAC or never attended one.
settingSecondary care including SACs and general neurology clinics.
participantsWe had 277 participants in the survey, aged 16 years old and over, diagnosed with ataxia and living in the UK. PRIMARY OUTCOME MEASURES: Patient experience and perception of the two healthcare services settings, patient level of satisfaction, difference in healthcare services use and costs.
resultsPatients gave positive feedback about the role of SAC in understanding their condition (96.8% of SAC group), in coordinating referrals to other healthcare specialists (86.6%), and in offering opportunities to take part in research studies (85.2%). Participants who attended a SAC reported a better management of their symptoms and a more personalised care received compared with participants who never attended a SAC (p<0.001). Costs were not significantly different in between those attending a SAC and those who did not. We identified some barriers for patients in accessing the SACs, and some gaps in the care provided, for which we made some recommendations.
conclusionsThis study provides useful information about ataxia patient care pathways in the UK. Overall, the results showed significantly higher patient satisfaction in SAC compared with non-SAC, at similar costs. The findings can be used to inform policy recommendations on how to improve treatment and care for people with these very rare and complex neurological diseases. Improving access to SAC for patients across the UK is one key policy recommendation of this study.
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