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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

Abstract 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...

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Hlavní autoři: Holly Walton, Pei Li Ng, Amy Simpson, Lara Bloom, Lyn S. Chitty, Naomi J. Fulop, Amy Hunter, Jennifer Jones, Joe Kai, Larissa Kerecuk, Maria Kokocinska, Kerry Leeson-Beevers, Sharon Parkes, Angus I. G. Ramsay, Alastair Sutcliffe, Christine Taylor, Stephen Morris
Médium: Artigo
Jazyk:Inglês
Vydáno: BMC 2023-11-01
Edice:Orphanet Journal of Rare Diseases
Témata:
Rare conditions
Rare diseases
Care coordination
Survey
Care plan
Care coordinator
On-line přístup:https://doi.org/10.1186/s13023-023-02934-9
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