Ataxia patient care pathway and associated healthcare costs in Italy: a cross-sectional survey

BACKGROUND: The ataxias are rare complex neurological disorders challenging for clinicians to manage. The costs of ataxia care and differences in healthcare use and treatment outcomes between specialised ataxia centres (SAC) and standard neurology services have not been investigated. OBJECTIVE: This study explored patient pathways, healthcare use and costs, comparing SAC with non-specialist settings in Italy. METHODS: A patient survey was distributed in Italy (May-September 2021) to collect information about the diagnosis and management of ataxias in SAC and non-specialist settings, healthcare service visits, and patients' satisfaction. We compared per-patient mean resource use for each contact type and health service cost, stratifying patients by SAC attendance. RESULTS: Among 174 participants, 44% saw a neurologist within 6 months of seeking medical advice, and 56% went to a SAC directly. Travelling was a top reason why people stopped going to a SAC and a barrier preventing patients from accessing it. SACs delivered better service to patients in various aspects of care. The differences in the number of contacts for various health services between the SAC and non-SAC groups were mostly non-significant. The mean total cost per patient over a one-year period was €1952 for non-SAC and €1666 for SAC. CONCLUSIONS: There was a trend towards patients' appreciation for SAC services compared with non-SAC services, without significant change in costs. We identified difficulties in attendance and adherence despite the significant number of SACs in Italy. We believe that the combination of face-to-face and telemedicine could improve patients' attendance at SACs.