Genetic Alliance UK, Third Floor, 86-90 Paul Street, London, EC2A 4NE, UK.
The Ehlers-Danlos Society, Office 7, 35-37 Ludgate Hill, London, EC4M 7JN, UK.
Orphanet J Rare Dis. 2021 Feb 10;16(1):76. doi: 10.1186/s13023-020-01664-6.
Care coordination is considered important for patients with rare conditions, yet research addressing the impact of care coordination is limited. This study aimed to explore how care coordination (or lack of) impacts on patients and carers. Semi-structured interviews were conducted with 15 patients and carers/parents in the UK, representing a range of rare conditions (including undiagnosed conditions). Transcripts were analysed thematically in an iterative process.
Participants described a range of experiences and views in relation to care coordination. Reports of uncoordinated care emerged: appointments were uncoordinated, communication between key stakeholders was ineffective, patients and carers were required to coordinate their own care, and care was not coordinated to meet the changing needs of patients in different scenarios. As a result, participants experienced an additional burden and barriers/delays to accessing care. The impacts described by patients and carers, either attributed to or exacerbated by uncoordinated care, included: impact on physical health (including fatigue), financial impact (including loss of earnings and travel costs), and psychosocial impact (including disruption to school, work and emotional burden). Overall data highlight the importance of flexible care, which meets individual needs throughout patients'/carers' journeys. Specifically, study participants suggested that the impacts may be addressed by: having support from a professional to coordinate care, changing the approach of clinics and appointments (where they take place, which professionals/services are available and how they are scheduled), and improving communication through the use of technology, care plans, accessible points of contact and multi-disciplinary team working.
This study provides further evidence of impacts of uncoordinated care; these may be complex and influenced by a number of factors. Approaches to coordination which improve access to care and lessen the time and burden placed on patients and carers may be particularly beneficial. Findings should influence future service developments (and the evaluation of such developments). This will be achieved, in the first instance, by informing the CONCORD Study in the UK.
协调护理被认为对患有罕见疾病的患者很重要，但针对协调护理影响的研究有限。本研究旨在探讨协调护理（或缺乏协调护理）如何影响患者及其照顾者。在英国，我们对 15 名患者及其照顾者/父母进行了半结构化访谈，他们代表了一系列罕见疾病（包括未确诊疾病）。在一个迭代过程中，对转录本进行了主题分析。
参与者描述了与协调护理相关的一系列经验和观点。出现了协调护理不善的报告：预约未协调，关键利益相关者之间的沟通无效，患者及其照顾者需要协调自己的护理，并且护理未协调以满足不同情况下患者不断变化的需求。因此，患者和照顾者经历了额外的负担和获取护理的障碍/延迟。患者和照顾者描述的影响，无论是归因于还是因协调不善而加剧，包括：对身体健康（包括疲劳）的影响、经济影响（包括收入损失和旅行费用）和心理社会影响（包括对学校、工作和情绪负担的干扰）。总体数据强调了灵活护理的重要性，这种护理满足患者/照顾者整个过程中的个人需求。具体而言，研究参与者建议可以通过以下方式解决这些影响：有专业人员来协调护理、改变诊所和预约的方式（包括它们发生的地点、可用的专业人员/服务以及如何安排）以及通过使用技术、护理计划、可及的联系点和多学科团队合作来改善沟通。
本研究进一步提供了协调护理不善影响的证据；这些影响可能很复杂，并受到多种因素的影响。改善护理机会并减轻患者及其照顾者时间和负担的协调方法可能特别有益。研究结果应影响未来的服务发展（以及此类发展的评估）。这将首先通过在英国的 CONCORD 研究来实现。
