Developing a taxonomy of care coordination for people living with rare conditions: a qualitative study
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 t...
| Main Authors: | , , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2022-04-01
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| Series: | Orphanet Journal of Rare Diseases |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s13023-022-02321-w |
| _version_ | 1817988693314502656 |
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| author | Holly Walton Amy Simpson Angus I. G. Ramsay Emma Hudson Amy Hunter Jennifer Jones Pei Li Ng Kerry Leeson-Beevers Lara Bloom Joe Kai Larissa Kerecuk Maria Kokocinska Alastair G. Sutcliffe Stephen Morris Naomi J. Fulop |
| author_facet | Holly Walton Amy Simpson Angus I. G. Ramsay Emma Hudson Amy Hunter Jennifer Jones Pei Li Ng Kerry Leeson-Beevers Lara Bloom Joe Kai Larissa Kerecuk Maria Kokocinska Alastair G. Sutcliffe Stephen Morris Naomi J. Fulop |
| author_sort | Holly Walton |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-04-14T00:37:17Z |
| format | Article |
| id | doaj.art-da4b5f2da9644371b51dbfe39af368ff |
| institution | Directory Open Access Journal |
| issn | 1750-1172 |
| language | English |
| last_indexed | 2024-04-14T00:37:17Z |
| publishDate | 2022-04-01 |
| publisher | BMC |
| record_format | Article |
| series | Orphanet Journal of Rare Diseases |
| spelling | doaj.art-da4b5f2da9644371b51dbfe39af368ff2022-12-22T02:22:19ZengBMCOrphanet Journal of Rare Diseases1750-11722022-04-0117112510.1186/s13023-022-02321-wDeveloping a taxonomy of care coordination for people living with rare conditions: a qualitative studyHolly Walton0Amy Simpson1Angus I. G. Ramsay2Emma Hudson3Amy Hunter4Jennifer Jones5Pei Li Ng6Kerry Leeson-Beevers7Lara Bloom8Joe Kai9Larissa Kerecuk10Maria Kokocinska11Alastair G. Sutcliffe12Stephen Morris13Naomi J. Fulop14Department of Applied Health Research, University College LondonDepartment of Applied Health Research, University College LondonDepartment of Applied Health Research, University College LondonPrimary Care Unit, Department of Public Health and Primary Care, University of CambridgeGenetic Alliance UKGenetic Alliance UKDepartment of Applied Health Research, University College LondonAlstrom Syndrome UKThe Ehlers-Danlos Society and Academic of Patient Engagement and Global Collaboration, Penn State College of MedicineDivision of Primary Care, School of Medicine, University of NottinghamBirmingham Women’s and Children’s NHS Foundation TrustBirmingham Women’s and Children’s NHS Foundation TrustUCL and Great Ormond Street Institute of Child HealthPrimary Care Unit, Department of Public Health and Primary Care, University of CambridgeDepartment of Applied Health Research, University College LondonAbstract 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.https://doi.org/10.1186/s13023-022-02321-wRare conditionsRare diseasesCare coordinationTaxonomyQualitativeHealth care organisation |
| spellingShingle | Holly Walton Amy Simpson Angus I. G. Ramsay Emma Hudson Amy Hunter Jennifer Jones Pei Li Ng Kerry Leeson-Beevers Lara Bloom Joe Kai Larissa Kerecuk Maria Kokocinska Alastair G. Sutcliffe Stephen Morris Naomi J. Fulop Developing a taxonomy of care coordination for people living with rare conditions: a qualitative study Orphanet Journal of Rare Diseases Rare conditions Rare diseases Care coordination Taxonomy Qualitative Health care organisation |
| title | Developing a taxonomy of care coordination for people living with rare conditions: a qualitative study |
| title_full | Developing a taxonomy of care coordination for people living with rare conditions: a qualitative study |
| title_fullStr | Developing a taxonomy of care coordination for people living with rare conditions: a qualitative study |
| title_full_unstemmed | Developing a taxonomy of care coordination for people living with rare conditions: a qualitative study |
| title_short | Developing a taxonomy of care coordination for people living with rare conditions: a qualitative study |
| title_sort | developing a taxonomy of care coordination for people living with rare conditions a qualitative study |
| topic | Rare conditions Rare diseases Care coordination Taxonomy Qualitative Health care organisation |
| url | https://doi.org/10.1186/s13023-022-02321-w |
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