Co-ordinated care for people affected by rare diseases: the CONCORD mixed-methods study

Morris, Stephen; Hudson, Emma; Bloom, Lara; Chitty, Lyn S.; Fulop, Naomi J.; Hunter, Amy; Jones, Jennifer; Kai, Joe; Kerecuk, Larissa; Kokocinska, Maria; Leeson-Beevers, Kerry; Ng, Pei Li; Parkes, Sharon; Ramsay, Angus I.G.; Simpson, Amy; Sutcliffe, Alastair; Taylor, Christine; Walton, Holly

Abstract

This study found evidence of a lack of co-ordinated care for people affected by rare diseases, which could have negative impacts on the physical and mental health of patients and families.

Citation

Morris, S., Hudson, E., Bloom, L., Chitty, L. S., Fulop, N. J., Hunter, A., …Walton, H. (2022). Co-ordinated care for people affected by rare diseases: the CONCORD mixed-methods study. Health and Social Care Delivery Research, 10(5), 1-220. https://doi.org/10.3310/lnzz5321

• Journal Article Type: Article
• Acceptance Date: Sep 1, 2021
• Publication Date: 2022-03
• Deposit Date: Mar 29, 2022
• Publicly Available Date: Mar 30, 2022
• Journal: Health and Social Care Delivery Research
• Print ISSN: 2755-0060
• Electronic ISSN: 2755-0079
• Publisher: NIHR Journals Library
• Peer Reviewed: Peer Reviewed
• Volume: 10
• Issue: 5
• Pages: 1-220
• DOI: https://doi.org/10.3310/lnzz5321
• Keywords: Co-ordinated care; rare diseases
• Public URL: https://nottingham-repository.worktribe.com/output/7612034
• Publisher URL: https://www.journalslibrary.nihr.ac.uk/hsdr/LNZZ5321#/abstract
• Additional Information: Permission to reproduce material from a published report is covered by the creative commons licence http://creativecommons.org/licenses/by/4.0/