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 professionals involved in care (collaboration between many or all professionals, collaboration between some professionals, 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.
Competing Interest Statement
HW, AIGR, EH, PLN, KLB, LB, JK, LK, MK, AGS, SM & 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.
Funding Statement
This study is funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme (HS&DR Project: 16/116/82). NJF is an NIHR Senior Investigator. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.
Author Declarations
I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.
Yes
The details of the IRB/oversight body that provided approval or exemption for the research described are given below:
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.
I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.
Yes
I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).
Yes
I have followed all appropriate research reporting guidelines and uploaded the relevant EQUATOR Network research reporting checklist(s) and other pertinent material as supplementary files, if applicable.
Yes
Footnotes
Declarations
Ethical approval and consent to participate
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.
Availability of data and materials
The datasets generated and/or analysed during the current study are not publicly available due to participant confidentiality but are available from the corresponding author on reasonable request.
Competing interests HW, AIGR, EH, PLN, KLB, LB, JK, LK, MK, AGS, SM & 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.
Funding details This study is funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme (HS&DR Project: 16/116/82). NJF is an NIHR Senior Investigator. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.
Data Availability
The datasets generated and/or analysed during the current study are not publicly available due to participant confidentiality but are available from the corresponding author on reasonable request.
List of abbreviations
- CONCORD
- Coordinated Care of Rare Diseases Study
- COVID-19
- Coronavirus Disease-19
- GP
- General practitioner
- HS&DR
- Health Services and Delivery Research programme
- MDT
- multidisciplinary team
- NHS
- National Health Service
- NICE
- The National Institute for Health and Care Excellence
- NIHR
- National Institute for Health Research
- PPIAG
- Public Patient Involvement Advisory Group
- UCL
- University College London
- UK
- United Kingdom