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

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 includ

SUBMITTER: Walton H 

PROVIDER: S-EPMC7319081 | biostudies-literature | 2020 Jun

REPOSITORIES: biostudies-literature