Walton Holly, Hudson Emma, Simpson Amy, Ramsay Angus I G, Kai Joe, Morris Stephen, Sutcliffe Alastair G, Fulop Naomi J
Department of Applied Health Research, University College London, London, UK.
Department of Public Health and Primary Care, University of Cambridge, Institute of Public Health, Forvie Site, Robinson Way, Cambridge, UK.
Int J Integr Care. 2020 Jun 25;20(2):14. doi: 10.5334/ijic.5464.
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.
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.
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.
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.
为了有效地协调对罕见病的护理，我们需要了解协调护理的含义。本综述旨在定义协调护理，并在罕见病背景下确定协调护理的组成部分；通过借鉴慢性病的相关证据。
进行一项系统性的范围综述。我们纳入了报告或定义并概述慢性病或罕见病协调护理组成部分的综述。采用主题分析法来制定定义并确定护理协调的组成部分。开展了利益相关者咨询（与患有罕见病的患者、护理人员和医疗保健专业人员进行了三个焦点小组讨论），以进一步探讨综述结果与罕见病的相关性。
我们纳入了154篇综述（n = 139篇特定于常见慢性病，n = 3篇特定于罕见病，n = 12篇既涉及常见/罕见病）。制定了协调的定义。对组成部分进行了识别，并按以下类别进行了分类：可能需要协调的部分、告知如何协调护理的部分、具有多种作用的部分或为协调提供背景的部分。
协调护理是多方面的，既有通用的组成部分，也有针对具体情况的组成部分。研究结果概述了许多针对罕见病和常见慢性病进行护理协调的方式。研究结果有助于开发并最终测试针对患有罕见病和常见慢性病患者的不同护理协调方式。
