Department of Applied Health Research, University College London, Gower Street, London, WC1E 6BT, UK.
Genetic Alliance UK, Creative Works, 7 Blackhorse Lane, London, E17 6DS, UK.
Orphanet J Rare Dis. 2022 Apr 20;17(1):171. doi: 10.1186/s13023-022-02321-w.
Improving care coordination is particularly important for individuals with rare conditions (who may experience multiple inputs into their care, across different providers and settings). To develop and evaluate strategies to potentially improve care coordination, it is necessary to develop a method for organising different ways of coordinating care for rare conditions. Developing a taxonomy would help to describe different ways of coordinating care and in turn facilitate development and evaluation of pre-existing and new models of care coordination for rare conditions. To the authors' knowledge, no studies have previously developed taxonomies of care coordination for rare conditions. This research aimed to develop and refine a care coordination taxonomy for people with rare conditions.
This study had a qualitative design and was conducted in the United Kingdom. To develop a taxonomy, six stages of taxonomy development were followed. We conducted interviews (n = 30 health care professionals/charity representatives/commissioners) and focus groups (n = 4 focus groups, 22 patients/carers with rare/ultra-rare/undiagnosed conditions). Interviews and focus groups were audio-recorded with consent, and professionally transcribed. Findings were analysed using thematic analysis. Themes were used to develop a taxonomy, and to identify which types of coordination may work best in which situations. To refine the taxonomy, we conducted two workshops (n = 12 patients and carers group; n = 15 professional stakeholder group).
Our taxonomy has six domains, each with different options. The six domains are: (1) Ways of organising care (local, hybrid, national), (2) Ways of organising those involved in care (collaboration between many or all individuals, collaboration between some individuals, a lack of collaborative approach), (3) Responsibility for coordination (administrative support, formal roles and responsibilities, supportive roles and no responsibility), (4) How often appointments and coordination take place (regular, on demand, hybrid), (5) Access to records (full or filtered access), and (6) Mode of care coordination (face-to-face, digital, telephone).
Findings indicate that there are different ways of coordinating care across the six domains outlined in our taxonomy. This may help to facilitate the development and evaluation of existing and new models of care coordination for people living with rare conditions.
改善护理协调对于患有罕见疾病的个体尤为重要（这些患者可能会在不同的医疗机构和环境中接受多种治疗）。为了制定并评估可能改善护理协调的策略，有必要开发一种组织罕见疾病护理协调的不同方式的方法。开发分类法有助于描述不同的护理协调方式，并有助于开发和评估针对罕见疾病的现有和新的护理协调模式。据作者所知，以前没有研究为罕见疾病的护理协调开发过分类法。本研究旨在为患有罕见疾病的患者开发和完善护理协调分类法。
本研究采用定性设计，在英国进行。为了开发分类法，遵循了分类法发展的六个阶段。我们进行了访谈（n=30 名医疗保健专业人员/慈善代表/专员）和焦点小组（n=4 个焦点小组，22 名患有罕见/超罕见/未确诊疾病的患者/照顾者）。征得同意后，对访谈和焦点小组进行了录音，并由专业人员进行了转录。使用主题分析对调查结果进行分析。主题用于开发分类法，并确定哪些类型的协调在哪些情况下效果最好。为了完善分类法，我们举办了两次研讨会（n=12 名患者和照顾者小组；n=15 名专业利益相关者小组）。
我们的分类法有六个领域，每个领域都有不同的选择。这六个领域是：（1）组织护理的方式（地方、混合、全国）；（2）组织参与护理的人员的方式（许多或所有人员之间的协作、一些人员之间的协作、缺乏协作方法）；（3）协调责任（行政支持、正式角色和责任、支持性角色和无责任）；（4）预约和协调发生的频率（定期、按需、混合）；（5）记录的获取（全面或过滤访问）；（6）护理协调模式（面对面、数字、电话）。
研究结果表明，在我们的分类法中概述的六个领域中，有不同的护理协调方式。这可能有助于促进针对患有罕见疾病的患者的现有和新的护理协调模式的开发和评估。
