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Experiences of coordinated care for people in the UK affected by rare diseases: cross-sectional survey of patients, carers, and healthcare professionals

BACKGROUND: Poorly coordinated care can have major impacts on patients and families affected by rare conditions, with negative physical health, psychosocial and financial consequences. This study aimed to understand how care is coordinated for rare diseases in the United Kingdom. METHODS: We underto...

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Detalles Bibliográficos
Autores principales: Walton, Holly, Ng, Pei Li, Simpson, Amy, Bloom, Lara, Chitty, Lyn S., Fulop, Naomi J., Hunter, Amy, Jones, Jennifer, Kai, Joe, Kerecuk, Larissa, Kokocinska, Maria, Leeson-Beevers, Kerry, Parkes, Sharon, Ramsay, Angus I. G., Sutcliffe, Alastair, Taylor, Christine, Morris, Stephen
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10668407/
https://www.ncbi.nlm.nih.gov/pubmed/37996938
http://dx.doi.org/10.1186/s13023-023-02934-9