NIHR Applied Research Collaboration Wessex, Southampton Science Park, Innovation Centre, Southampton, UK.
School of Health Sciences, University of Southampton, Southampton, UK.
Health Expect. 2024 Feb;27(1):e13948. doi: 10.1111/hex.13948.
People living with long-term neurological conditions (LTNCs) have complex needs that demand intensive care coordination between sectors. This review aimed to establish if integrated care improves outcomes for people, and what characterises successful interventions.
A systematic review of the literature was undertaken evaluating multisectoral integrated care interventions in people living with Parkinson's disease (PD), Multiple Sclerosis (MS) and Huntington's disease (HD). Strength of evidence was rated for the different outcomes.
A total of 15 articles were included, reporting on 2095 patients and caregivers, finding that integrated care can improve people's access to resources and reduce patients' depression. UK studies indicated improvements in patients' quality of life, although the international literature was inconclusive. Few programmes considered caregivers' outcomes, reporting no difference or even worsening in depression, burden and quality of life. Overall, the evidence showed a mismatch between people's needs and outcomes measured, with significant outcomes (e.g., self-management, continuity of care, care experience) lacking. Successful programmes were characterised by expert knowledge, multisectoral care coordination, care continuity and a person-centred approach.
The impact of integrated care programmes on people living with LTNCs is limited and inconclusive. For a more person-centred approach, future studies need to assess integrated care from a service-user perspective.
Thirty people living with LTNCs were involved in this review, through defining research questions, validating the importance of the project, and increasing the researchers' understanding on what matters to service users. A patient and public involvement subgroup of representatives with lived experience on PD, MS and HD identified the need for more person-centred integrated care, with specific concerns over care fragmentation, care duplication and care continuity. This was key to data analysis and formulating the characteristics of successful and unsuccessful integrated care programmes from the perspective of service users. The discrepancy between service users' needs and the outcomes assessed in the literature point to user-driven research as the solution to address what matters to patients and caregivers.
患有长期神经疾病（LTNCs）的人有复杂的需求，需要不同部门之间进行密集的护理协调。本综述旨在确定综合护理是否能改善患者的预后，并确定成功干预的特征。
对评估帕金森病（PD）、多发性硬化症（MS）和亨廷顿病（HD）患者的多部门综合护理干预的文献进行系统回顾。对不同结局的证据强度进行了评估。
共纳入 15 篇文章，报道了 2095 名患者和护理人员，发现综合护理可以改善人们获得资源的机会，并减轻患者的抑郁情绪。英国的研究表明，患者的生活质量有所改善，尽管国际文献尚无定论。很少有方案考虑到护理人员的结局，报告称抑郁、负担和生活质量没有差异甚至恶化。总的来说，证据表明人们的需求与所测量的结果之间存在不匹配，缺乏重要的结果（例如，自我管理、护理连续性、护理体验）。成功的方案的特点是专家知识、多部门护理协调、护理连续性和以患者为中心的方法。
综合护理方案对患有 LTNCs 的人的影响有限且不确定。为了采取更以患者为中心的方法，未来的研究需要从服务使用者的角度评估综合护理。
30 名患有 LTNCs 的患者参与了这项综述，通过确定研究问题、验证项目的重要性以及提高研究人员对服务使用者关注事项的理解来参与。一个由 PD、MS 和 HD 患者和公众代表组成的患者和公众参与小组确定了对更以患者为中心的综合护理的需求，具体关注护理碎片化、护理重复和护理连续性问题。这是对数据进行分析以及从服务使用者的角度构建成功和不成功的综合护理方案特征的关键。服务使用者的需求与文献中评估的结果之间存在差异，这表明以用户为驱动的研究是解决患者和护理人员关注事项的方法。
