Patient pathways for rare diseases in Europe: ataxia as an example.
Julie VallortigaraJulie GreenfieldBarry HuntDeborah HoffmanCarola ReinhardHolm GraessnerAntonio FedericoVinciane QuoidbachSteve MorrisPaola GiuntiPublished in: Orphanet journal of rare diseases (2023)
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.
Keyphrases
- end stage renal disease
- healthcare
- ejection fraction
- chronic kidney disease
- newly diagnosed
- prognostic factors
- public health
- patient reported outcomes
- pain management
- case report
- brain injury
- social media
- insulin resistance
- clinical practice
- subarachnoid hemorrhage
- health information
- affordable care act
- patient satisfaction