Developing a taxonomy of care coordination for people living with rare conditions: a qualitative study.
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Authors
Simpson, Amy
Ramsay, Angus I G
Hudson, Emma
Hunter, Amy
Jones, Jennifer
Leeson-Beevers, Kerry
Bloom, Lara
Kai, Joe
Kerecuk, Larissa
Kokocinska, Maria
Sutcliffe, Alastair G
Morris, Stephen
Fulop, Naomi J
Publication Date
2022-04-20Journal Title
Orphanet journal of rare diseases
ISSN
1750-1172
Volume
17
Issue
1
Language
eng
Type
Article
This Version
VoR
Metadata
Show full item recordCitation
Walton, H., Simpson, A., Ramsay, A. I. G., Hudson, E., Hunter, A., Jones, J., Ng, P. L., et al. (2022). Developing a taxonomy of care coordination for people living with rare conditions: a qualitative study.. Orphanet journal of rare diseases, 17 (1) https://doi.org/10.1186/s13023-022-02321-w
Abstract
<h4>Background</h4>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.<h4>Methods</h4>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).<h4>Results</h4>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).<h4>Conclusions</h4>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.
Keywords
Taxonomy, Qualitative, Care Coordination, Rare Diseases, Health Care Organisation, Rare Conditions, Humans, Focus Groups, Qualitative Research, Telephone, Caregivers, United Kingdom
Sponsorship
National Institute for Health Research (NIHR) (16/116/82)
Identifiers
35443702, PMC9020422
External DOI: https://doi.org/10.1186/s13023-022-02321-w
This record's URL: https://www.repository.cam.ac.uk/handle/1810/337382
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