Experiences of coordinated care for people in the UK affected by rare diseases: cross-sectional survey of patients, carers, and healthcare professionals
(2023)
Journal Article
Walton, H., Ng, P. L., Simpson, A., Bloom, L., Chitty, L. S., Fulop, N. J., Hunter, A., Jones, J., Kai, J., Kerecuk, L., Kokocinska, M., Leeson-Beevers, K., Parkes, S., Ramsay, A. I., Sutcliffe, A., Taylor, C., & Morris, S. (2023). Experiences of coordinated care for people in the UK affected by rare diseases: cross-sectional survey of patients, carers, and healthcare professionals. Orphanet Journal of Rare Diseases, 18(1), Article 364. https://doi.org/10.1186/s13023-023-02934-9
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 d...
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