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

Published version
Peer-reviewed

Type

Article

Change log

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.

Description

Keywords

chronic conditions, components, coordinated care, definition, rare conditions, scoping review

Journal Title

Int J Integr Care

Conference Name

Journal ISSN

1568-4156
1568-4156

Volume Title

20

Publisher

Ubiquity Press, Ltd.
Sponsorship
NIHR Evaluation Trials and Studies Coordinating Centre (NIHRDH-HS&DR/16/116/82)
NIHR Evaluation Trials and Studies Coordinating Centre (16/116/82)