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

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

doi:10.5334/ijic.5464

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.

Highlights

To coordinate care effectively for rare conditions, we need to understand what coordinated care means
The overarching aim of this study was to provide a definition of coordinated care and identify components of coordinated care for rare diseases
Scoping review methodology was appropriate as defining coordinated care and identifying components of coordinated care for common and rare chronic conditions is a broad topic which requires accumulation of evidence using different study designs [22]

Summary

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. 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. 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. Living with a rare or common chronic condition can have a large impact on a person’s life, including their emotional and psychological health and social and financial situation [1,2,3,4].

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Conclusion