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

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 specific...

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Published inOrphanet journal of rare diseases Vol. 18; no. 1; pp. 1 - 10
Main Authors Vallortigara, Julie, Greenfield, Julie, Hunt, Barry, Hoffman, Deborah, Reinhard, Carola, Graessner, Holm, Federico, Antonio, Quoidbach, Vinciane, Morris, Steve, Giunti, Paola
Format Journal Article
LanguageEnglish
Published London BioMed Central Ltd 17.10.2023
BioMed Central
BMC
Subjects
Ataxia
Care and treatment
Care pathway
Comparative analysis
Diagnosis
Feedback
Health care
Health care industry
Health surveys
Medical care
Medical research
Medicine, Experimental
Nervous system diseases
Neurological diseases
Patient satisfaction
Patient survey
Patients
Primary care
Rare diseases
Specialist centre
Surveys
Utilization
Italy
United Kingdom
Germany
United Kingdom > UK
Europe
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Summary: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. 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 services, and patients' satisfaction of received treatment. This study provides crucial information about the ataxia patients care pathways in three European countries. Overall, the results showed a trend in patients' satisfaction being better in SAC compared to non-SAC. The outcomes can be used now for policy recommendations on how to improve treatment and care for people with these very rare and complex neurological diseases across Europe.
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ISSN:1750-1172
1750-1172
DOI:10.1186/s13023-023-02907-y