Patient pathways for rare diseases in Europe: ataxia as an example.

ABSTRACT:

Background

Progressive ataxias are rare and complex neurological disorders that represent a challenge for the clinicians to diagnose and manage them. This study explored the patient pathways of individuals attending specialist ataxia centres (SAC) compared with non-specialist settings. We investigated specifically how diagnosis was reached, the access to healthcare services, treatments, and care satisfaction. The focus of this study was on early intervention, coordination of treatment to understand the care provision in different countries.

Methods

A patient survey was done in the UK, Germany and Italy to gather information about diagnosis and management of the ataxias in specialist (SAC) and non-specialist settings, utilisation of other primary and secondary health care ser

SUBMITTER: Vallortigara J 

PROVIDER: S-EPMC10583310 | biostudies-literature | 2023 Oct

REPOSITORIES: biostudies-literature