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.

Peer reviewed: True ; Acknowledgements: We thank all the participants for their contribution to our study. We thank Ataxia UK for their support towards this project. We thank Kelly Uckac, clinical coordinator at London Ataxia Centre, for the collection of data regarding the health resource use by patients. This project was part of the second round of the 'Value of Treatment' project supported by the European Brain Council. Costello Medical contributed to the design of the survey and created the initial database for the analysis. ; Publication status: Published ; OBJECTIVES: This 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. DESIGN: A 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. SETTING: Secondary care including SACs and general neurology clinics. PARTICIPANTS: We 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. RESULTS: Patients 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 ...