Experiences of coordinated care for people in the UK affected by rare diseases: cross-sectional survey of patients, carers, and healthcare professionals.
Holly WaltonPei Li NgAmy SimpsonLara BloomLyn S ChittyNaomi J FulopAmy HunterJennifer JonesJoe KaiLarissa KerecukMaria KokocinskaKerry Leeson-BeeversSharon ParkesAngus I G RamsayAlastair G SutcliffeChristine TaylorStephen MorrisPublished in: Orphanet journal of rare diseases (2023)
Care for families with rare conditions is generally not well coordinated in the UK, with findings indicating limited access to care coordinators, specialist centres and care plans. Better understanding of these issues can inform how care coordination might be improved and embrace the needs and preferences of patients and families affected by rare conditions.