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Defining Coordinated Care for People with Rare Conditions: A Scoping Review

Walton, Holly; Hudson, Emma; Simpson, Amy; Ramsay, Angus I. G.; Kai, Joe; Morris, Stephen; Fulop, Naomi J.; Sutcliffe, Alastair G.

Defining Coordinated Care for People with Rare Conditions: A Scoping Review Thumbnail


Authors

Holly Walton

Emma Hudson

Amy Simpson

Angus I. G. Ramsay

Stephen Morris

Naomi J. Fulop

Alastair G. Sutcliffe



Abstract

Introduction: To coordinate care effectively for rare conditions, we need to understand what coordinated care means. This review aimed to define coordinated care and identify components of coordinated care within the context of rare diseases; by drawing on evidence from chronic conditions.

Methods: A systematic scoping review. We included reviews that reported or defined and outlined components of coordinated care for chronic or rare conditions. Thematic analysis was used to develop a definition and identify components or care coordination. Stakeholder consultations (three focus groups with patients, carers and healthcare professionals with experience of rare conditions) were held to further explore the relevance of review findings for rare conditions.

Results: We included 154 reviews (n = 139 specific to common chronic conditions, n = 3 specific to rare conditions, n = 12 both common/rare conditions). A definition of coordination was developed. Components were identified and categorised by those that: may need to be coordinated, inform how to coordinate care, have multiple roles, or that contextualise coordination.

Conclusions: Coordinated care is multi-faceted and has both generic and context-specific components. Findings outline many ways in which care may be coordinated for both rare and common chronic conditions. Findings can help to develop and eventually test different ways of coordinating care for people with rare and common chronic conditions.

Citation

Walton, H., Hudson, E., Simpson, A., Ramsay, A. I. G., Kai, J., Morris, S., Fulop, N. J., & Sutcliffe, A. G. (2020). Defining Coordinated Care for People with Rare Conditions: A Scoping Review. International Journal of Integrated Care, 20(2), Article 14. https://doi.org/10.5334/ijic.5464

Journal Article Type Article
Acceptance Date Jun 1, 2020
Online Publication Date Jun 25, 2020
Publication Date Jun 25, 2020
Deposit Date Jun 30, 2020
Publicly Available Date Jul 2, 2020
Journal International Journal of Integrated Care
Publisher Ubiquity Press
Peer Reviewed Peer Reviewed
Volume 20
Issue 2
Article Number 14
DOI https://doi.org/10.5334/ijic.5464
Keywords Health Policy; Sociology and Political Science; Health (social science)
Public URL https://nottingham-repository.worktribe.com/output/4740577
Publisher URL https://www.ijic.org/articles/10.5334/ijic.5464