Preferences for coordinated care for rare diseases: discrete choice experiment
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.
Authors
- Holly Walton (ORCID: https://orcid.org/0000-0002-8746-059X)
- Lara Bloom (ORCID: https://orcid.org/0000-0002-6168-8094)
- Amy Simpson (ORCID: https://orcid.org/0000-0001-7880-4218)
- Amy Hunter (ORCID: https://orcid.org/0000-0001-5076-8761)
- Stephen Morris (ORCID: https://orcid.org/0000-0002-5828-3563)
- Maria Kokocinska (ORCID: https://orcid.org/0000-0001-7262-1314)
- Angus I. G. Ramsay (ORCID: https://orcid.org/0000-0002-4446-6916)
- Naomi Fulop (ORCID: https://orcid.org/0000-0001-5306-6140)
- Joe Kai (ORCID: https://orcid.org/0000-0001-9040-9384)
- Lyn S. Chitty (ORCID: https://orcid.org/0000-0002-4857-7138)
- Pei Li Ng (ORCID: https://orcid.org/0000-0001-8411-220X)
- Kerry Leeson‐Beevers (ORCID: https://orcid.org/0000-0001-8826-5086)
- Alastair Sutcliffe (ORCID: https://orcid.org/0000-0001-8542-6155)
- Larissa Kerecuk (ORCID: https://orcid.org/0000-0001-5003-3183)
- Christine A. Taylor
Institutions
- Oxford Brookes University (GB)
- University of Nottingham (GB)
- University of Cambridge (GB)
- Great Ormond Street Hospital (GB)
- Great Ormond Street Hospital for Children NHS Foundation Trust (GB)
- Health Data Research UK (GB)
- Genetic Alliance UK (United Kingdom) (GB)
- Birmingham Women’s and Children’s NHS Foundation Trust (GB)
- NIHR Research Delivery Network (GB)
- Synome (United Kingdom) (GB)
- University College London (GB)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2024-09-09
- DOI
- https://doi.org/10.1186/s13023-024-03353-0
- Citations
- 3
- Primary Topic
- Health Systems, Economic Evaluations, Quality of Life
- Type
- article
- Field-Weighted Citation Impact
- 3.39
Funders
- National Institute for Health and Care Research
- Department of Health and Social Care
- Health Services and Delivery Research Programme