Preferences for coordinated care for rare diseases: discrete choice experiment.
Stephen MorrisHolly WaltonAmy SimpsonKerry Leeson-BeeversLara BloomAmy HunterAngus I G RamsayNaomi J FulopLyn S ChittyJoe KaiAlastair G SutcliffeMaria KokocinskaLarissa KerecukChristine A TaylorPei Li NgPublished in: Orphanet journal of rare diseases (2024)
The findings highlight that people value better coordinated care, in line with policy documents emphasising commitments to coordinated care for people affected by rare diseases. This study highlights the factors that could be included in service provision as ways of improving the coordination of care for people affected by rare diseases.