Dontje M L, Kruitwagen-van Reenen E, Visser-Meily J M A, Beelen A
Department of Rehabilitation, Physical Therapy Science and Sports, UMC Utrecht Brain Centre, University Medical Centre, Utrecht, the Netherlands.
Centre of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Centre, University Medical Centre Utrecht, and De Hoogstraat Rehabilitation, Utrecht, the Netherlands.
Implement Sci Commun. 2021 Feb 25;2(1):25. doi: 10.1186/s43058-021-00130-z.
In the absence of a cure for amyotrophic lateral sclerosis (ALS), a progressive neurodegenerative disease, treatment consists of symptomatic management by a multidisciplinary healthcare team and is mainly aimed at optimizing patients' quality of life. Because the course of the disease is often erratic and varies between patients, it is imperative for patients with ALS to be closely monitored. E-health innovations that can monitor disease progression remotely have great potential to tailor the care to the needs of individual patients with ALS. Therefore, the e-health innovation "ALS Home-monitoring and Coaching" was developed employing a user-centered design process and implemented at the University Medical Center Utrecht, the Netherlands in 2017. Because ALS Home-monitoring and Coaching was shown to be feasible and well received by patients and healthcare professionals at University Medical Centre Utrecht, we aim to implement this e-health innovation nationwide, starting with 10 ALS care teams in different rehabilitation settings spread across the Netherlands.
This research focuses on the implementation process and the user experiences with ALS Home-monitoring and Coaching of both patients and healthcare professionals. We will use a participatory action research approach, with the stakeholders involved in all stages of the implementation process. The implementation process model of Grol and Wensing was used to structure and support planning, execution and evaluation of the implementation strategy. The expected barriers and facilitators will be explored and identified in focus group settings using the Theoretical Domains Framework. After that, each team will develop their own action plan with strategies for how to resolve each barrier. The teams will include 5-10 ALS patients with whom they will test their implementation plan and provide care with ALS Home-monitoring and Coaching for approximately 3 months. Afterwards, the implementation and the user experiences will be evaluated with digital surveys based on the evaluation framework of Proctor (e.g., acceptability, adoption, appropriateness).
Using implementation theories, this study will provide inside in factors influencing implementation outcomes and strategies that can be used to overcome barriers. This will enhance our understanding of how to successfully implement e-health innovations in multidisciplinary care in rehabilitation settings.
Trial NL8542 registered at Netherlands Trial Register (trialregister.nl) on 15th April 2020.
肌萎缩侧索硬化症（ALS）是一种进行性神经退行性疾病，目前尚无治愈方法，其治疗由多学科医疗团队进行症状管理，主要目标是优化患者的生活质量。由于该疾病的病程通常不稳定且患者之间存在差异，因此对ALS患者进行密切监测至关重要。能够远程监测疾病进展的电子健康创新具有根据ALS个体患者需求定制护理的巨大潜力。因此，电子健康创新项目“ALS家庭监测与指导”采用以用户为中心的设计流程开发，并于2017年在荷兰乌得勒支大学医学中心实施。由于“ALS家庭监测与指导”在乌得勒支大学医学中心被证明是可行的，并且受到患者和医疗专业人员的欢迎，我们旨在在全国范围内实施这一电子健康创新项目，首先从荷兰不同康复环境中的10个ALS护理团队开始。
本研究聚焦于“ALS家庭监测与指导”的实施过程以及患者和医疗专业人员的用户体验。我们将采用参与式行动研究方法，让利益相关者参与实施过程的各个阶段。使用Grol和Wensing的实施过程模型来构建和支持实施策略的规划、执行和评估。将使用理论领域框架在焦点小组环境中探索和识别预期的障碍和促进因素。之后，每个团队将制定自己的行动计划，包括解决每个障碍的策略。这些团队将纳入5 - 名ALS患者，他们将与这些患者一起测试实施计划，并使用“ALS家庭监测与指导”提供约3个月的护理。之后，将根据Proctor的评估框架（如可接受性、采用率、适宜性）通过数字调查对实施情况和用户体验进行评估。
本研究将运用实施理论，深入探讨影响实施结果的因素以及可用于克服障碍的策略。这将增进我们对如何在康复环境中的多学科护理中成功实施电子健康创新的理解。
2020年4月15日在荷兰试验注册中心（trialregister.nl）注册，试验编号NL8542。
