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

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:...

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Autores principales: Walton, Holly, Hudson, Emma, Simpson, Amy, Ramsay, Angus I. G., Kai, Joe, Morris, Stephen, Sutcliffe, Alastair G., Fulop, Naomi J.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Ubiquity Press 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7319081/
https://www.ncbi.nlm.nih.gov/pubmed/32607101
http://dx.doi.org/10.5334/ijic.5464
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author Walton, Holly
Hudson, Emma
Simpson, Amy
Ramsay, Angus I. G.
Kai, Joe
Morris, Stephen
Sutcliffe, Alastair G.
Fulop, Naomi J.
author_facet Walton, Holly
Hudson, Emma
Simpson, Amy
Ramsay, Angus I. G.
Kai, Joe
Morris, Stephen
Sutcliffe, Alastair G.
Fulop, Naomi J.
author_sort Walton, Holly
collection PubMed
description 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.
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spelling pubmed-73190812020-06-29 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 Sutcliffe, Alastair G. Fulop, Naomi J. Int J Integr Care Research and Theory 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. Ubiquity Press 2020-06-25 /pmc/articles/PMC7319081/ /pubmed/32607101 http://dx.doi.org/10.5334/ijic.5464 Text en Copyright: © 2020 The Author(s) http://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution 4.0 International License (CC-BY 4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. See http://creativecommons.org/licenses/by/4.0/.
spellingShingle Research and Theory
Walton, Holly
Hudson, Emma
Simpson, Amy
Ramsay, Angus I. G.
Kai, Joe
Morris, Stephen
Sutcliffe, Alastair G.
Fulop, Naomi J.
Defining Coordinated Care for People with Rare Conditions: A Scoping Review
title Defining Coordinated Care for People with Rare Conditions: A Scoping Review
title_full Defining Coordinated Care for People with Rare Conditions: A Scoping Review
title_fullStr Defining Coordinated Care for People with Rare Conditions: A Scoping Review
title_full_unstemmed Defining Coordinated Care for People with Rare Conditions: A Scoping Review
title_short Defining Coordinated Care for People with Rare Conditions: A Scoping Review
title_sort defining coordinated care for people with rare conditions: a scoping review
topic Research and Theory
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7319081/
https://www.ncbi.nlm.nih.gov/pubmed/32607101
http://dx.doi.org/10.5334/ijic.5464
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