Development of models of care coordination for rare conditions: A qualitative study

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

Abstract

Introduction: Improving care coordination for people with rare conditions may help to reduce burden on patients and carers and improve the care that patients receive. We recently developed a taxonomy of different ways of coordinating care for rare conditions. It is not yet known which models of care coordination are appropriate in different situations. This study aimed to: (1) explore what types of care coordination may be appropriate in different situations, and (2) use these findings to develop hypothetical models of care coordination for rare conditions.

Methods: To explore appropriateness of different types of care coordination, we conducted interviews (n = 30), four focus groups (n = 22) and two workshops (n = 27) with patients, carers, healthcare professionals, commissioners, and charity representatives. Participants were asked about preferences, benefits and challenges, and the factors influencing coordination. Thematic analysis was used to develop hypothetical models of care coordination. Models were refined following feedback from workshop participants.

Results: Stakeholders prefer models of care that: are nationally centralised or a hybrid of national and local care, involve professionals collaborating to deliver care, have clear roles and responsibilities outlined (including administrative, coordinator, clinical and charity roles), provide access to records and offer flexible appointments (in terms of timing and mode). Many factors influenced coordination, including those relating to the patient (e.g., condition complexity, patient’s location and ability to coordinate their own care), the healthcare professional (e.g., knowledge and time), the healthcare environment (e.g., resources) and societal factors (e.g., availability of funding). We developed and refined ten illustrative hypothetical models of care coordination for rare conditions.

Conclusion: Findings underline that different models of care coordination may be appropriate in different situations. It is possible to develop models of care coordination which are tailored to the individual in context. Findings may be used to facilitate planning around which models of care coordination may be appropriate in different services or circumstances. Findings may also be used by key stakeholders (e.g. patient organisations, clinicians and service planners) as a decision-making tool.

Citation

Walton, H., Simpson, A., Ramsay, A. I., Hunter, A., Jones, J., Ng, P. L., …Fulop, N. J. (2022). Development of models of care coordination for rare conditions: A qualitative study. Orphanet Journal of Rare Diseases, 17, Article 49. https://doi.org/10.1101/2021.11.16.21266395

• Journal Article Type: Article
• Acceptance Date: Jan 30, 2022
• Online Publication Date: Feb 14, 2022
• Publication Date: Feb 14, 2022
• Deposit Date: Feb 20, 2022
• Publicly Available Date: Feb 22, 2022
• Journal: Orphanet Journal of Rare Diseases
• Electronic ISSN: 1750-1172
• Publisher: Springer Verlag
• Peer Reviewed: Peer Reviewed
• Volume: 17
• Article Number: 49
• DOI: https://doi.org/10.1101/2021.11.16.21266395
• Keywords: Care coordination, Rare conditions, Rare diseases, Qualitative, Health care organisation
• Public URL: https://nottingham-repository.worktribe.com/output/7349579
• Publisher URL: https://ojrd.biomedcentral.com/articles/10.1186/s13023-022-02190-3