Developing a taxonomy of care coordination for people living with rare conditions: a qualitative study

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

Abstract

Background: Improving care coordination is particularly important for individuals with rare conditions (who may experience multiple inputs into their care, across different providers and settings). To develop and evaluate strategies to potentially improve care coordination, it is necessary to develop a method for organising different ways of coordinating care for rare conditions. Developing a taxonomy would help to describe different ways of coordinating care and in turn facilitate development and evaluation of pre-existing and new models of care coordination for rare conditions. To the authors’ knowledge, no studies have previously developed taxonomies of care coordination for rare conditions. This research aimed to develop and refine a care coordination taxonomy for people with rare conditions. Methods: This study had a qualitative design and was conducted in the United Kingdom. To develop a taxonomy, six stages of taxonomy development were followed. We conducted interviews (n = 30 health care professionals/charity representatives/commissioners) and focus groups (n = 4 focus groups, 22 patients/carers with rare/ultra-rare/undiagnosed conditions). Interviews and focus groups were audio-recorded with consent, and professionally transcribed. Findings were analysed using thematic analysis. Themes were used to develop a taxonomy, and to identify which types of coordination may work best in which situations. To refine the taxonomy, we conducted two workshops (n = 12 patients and carers group; n = 15 professional stakeholder group). Results: Our taxonomy has six domains, each with different options. The six domains are: (1) Ways of organising care (local, hybrid, national), (2) Ways of organising those involved in care (collaboration between many or all individuals, collaboration between some individuals, a lack of collaborative approach), (3) Responsibility for coordination (administrative support, formal roles and responsibilities, supportive roles and no responsibility), (4) How often appointments and coordination take place (regular, on demand, hybrid), (5) Access to records (full or filtered access), and (6) Mode of care coordination (face-to-face, digital, telephone). Conclusions: Findings indicate that there are different ways of coordinating care across the six domains outlined in our taxonomy. This may help to facilitate the development and evaluation of existing and new models of care coordination for people living with rare conditions.

Citation

Walton, H., Simpson, A., Ramsay, A. I., Hudson, E., Hunter, A., Jones, J., …Fulop, N. J. (2022). Developing a taxonomy of care coordination for people living with rare conditions: a qualitative study. Orphanet Journal of Rare Diseases, 17, Article 171. https://doi.org/10.1186/s13023-022-02321-w

• Journal Article Type: Article
• Acceptance Date: Apr 9, 2022
• Online Publication Date: Apr 20, 2022
• Publication Date: Apr 20, 2022
• Deposit Date: May 20, 2022
• Publicly Available Date: May 20, 2022
• Journal: Orphanet Journal of Rare Diseases
• Electronic ISSN: 1750-1172
• Publisher: Springer Verlag
• Peer Reviewed: Peer Reviewed
• Volume: 17
• Article Number: 171
• DOI: https://doi.org/10.1186/s13023-022-02321-w
• Keywords: Pharmacology (medical); Genetics (clinical); General Medicine
• Public URL: https://nottingham-repository.worktribe.com/output/8137444
• Publisher URL: https://ojrd.biomedcentral.com/articles/10.1186/s13023-022-02321-w
• Additional Information: Received: 24 November 2021; Accepted: 9 April 2022; First Online: 20 April 2022; : ; : This study received ethical approval from the London-Surrey Borders Research Ethics Committee of the Health Research Authority (reference: 19/LO/0250). Participants provided informed consent to participate in this study and for anonymised quotes to be published.; : Not applicable as all individual quotes are fully anonymised. As part of the consent to participate, all participants gave consent to their anonymised quotes being used in research publications.; : HW, AIGR, EH, PLN, KLB, LB, JK, LK, MK, AGS, SM and NJF declare they have no competing interests. AS, AH and JJ are employees of Genetic Alliance UK. Genetic Alliance UK runs Rare Disease UK—a campaign for people with rare diseases and all who support them.