Implementation Strategies to Promote Advance Care Planning among Persons Living with ADRD and those with Mild Cognitive Impairment in Outpatient Primary Care Practices

许多患有阿尔茨海默病及相关痴呆症(AD/ADRD)和轻度认知障碍(MCI)的社区居民在生命的最后一年接受了积极的医疗干预，尽管这种护理对他们的生活质量或生存质量的益处尚不确定。研究提出的担忧是，这种护理可能与患者的目标和价值观不一致，甚至可能与较差的护理质量有关。这些结果强调了ACP在病程早期的重要性。不幸的是，很少有认知受损的老年人在保留决策能力的情况下真正参与ACP。因此，越来越多的人认识到，改善对AD/ADRD或MCI患者的目标导向护理将需要在疾病过程的早期更多地关注ACP。1、2患者门户可以是一种创新的方式，可以在已经紧张的短暂临床访问之外吸引患者参与ACP，并允许轻松地记录ACP的意愿。研究表明，使用基于门户的ACP工具和激励性电子消息传递是提高ACP和文档参与度的一种实用可行的方法；但在AD/ADRD或MCI患者中研究不足。3-8这项研究建议的中心假设是，在常规初级保健访问之前通过患者门户发送基于用户友好的ACP工具(ACPdSmart)和励志消息，将提高AD/ADRD或MCI患者的ACP覆盖面和采用率。这项工作将实现以下具体目标：(1)在患有AD/ADRD或MCI的社区居民及其护理合作伙伴中，采用以用户为中心的设计方法进行可用性测试，以改进ACPdSmart门户工具的人性化；(2)在患者门户网站内试行ACPdSmart工具，并辅之以励志信息，以提高患有AD/ADRD或MCI的社区居民的ACP覆盖范围和采用情况；以及(3)评估ACPdSmart干预措施在采用者和未采用者中的接受度、适宜性和实施障碍。PI将利用出色的研究环境和实施科学、临床信息学和定性分析方面的专家指导团队。在他们的指导下，通过授课课程和实践经验，PI将获得必要的实施科学、定性研究设计、数据收集和分析以及以用户为中心的设计原则方面的培训，成为一名独立的翻译临床医生科学家。这一建议将为R01在一项务实的、多站点、集群随机试验中测试基于门户的ACPdSmart干预奠定基础。这项以患者为导向的指导研究职业发展奖(K23)将促进我们对有效实施战略的理解，以改善AD/ADRD或MCI患者的ACP，并将及时推动PI实现成为照顾脆弱老年人的独立翻译临床科学家和实施科学领导者的长期目标。

Many community-dwelling persons living with Alzheimer’s disease and related dementias (AD/ADRD) and those with mild cognitive impairment (MCI) receive aggressive medical interventions within the last year of their life, despite the uncertainty about the benefit of such care to their quality of life or survival. Studies have raised concerns that such care may not be in alignment with patients’ goals and values and may even be associated with worse quality of care. These outcomes highlight the importance of ACP early within their disease course. Unfortunately, very few cognitively-impaired older adults actually participate in ACP while they still retain decision making capacity. As a result, there is growing recognition that improving goal-directed care for persons living with AD/ADRD or MCI will require greater focus on ACP early in the disease course.1,2 Patient portals can be an innovative way to engage patient’s in ACP outside of brief clinical visits that are already strained and allow for easy documentation of ACP wishes. Studies have shown that the use of portal-based ACP tools along with motivational electronic messaging is a practical and feasible way to improve engagement in ACP and documentation; but has been understudied within persons with AD/ADRD or MCI.3-8 The central hypothesis for this research proposal is that sending a user-friendly portal based ACP tool (ACPdSmart) coupled with motivational messages through the patient portal prior to a routine primary care visit will improve ACP reach and adoption among persons living with AD/ADRD or MCI. This will be accomplished with the following Specific Aims: (1) to conduct usability testing with a user-centered design approach among community-dwelling persons with AD/ADRD or MCI and their care partner to improve the user-friendliness of the ACPdSmart portal tool; (2) to pilot-test the ACPdSmart tool within the patient portal paired with a motivational message to improve ACP reach and adoption among community-dwelling persons with AD/ADRD or MCI; and (3) to evaluate acceptability, appropriateness, and implementation barriers of the ACPdSmart intervention among adopters and non-adopters. The PI will capitalize on an outstanding research environment and a mentorship team of experts in implementation science, clinical informatics, and qualitative analysis. With their guidance and through didactic coursework and hands-on experience, the PI will obtain the necessary training in implementation science, qualitative research design, data collection, and analysis, and user- centered design principles to become an independent translational clinician scientists. This proposal will lay the groundwork for an R01 to test the portal based ACPdSmart intervention in a pragmatic, multi-site, cluster randomized trial. This Mentored Patient-Oriented Research Career Development Award (K23) will advance our understanding of effective implementation strategies to improve ACP among persons living with AD/ADRD or MCI and will be a timely catalyst for the PI in achieving the long-term goal of becoming an independent translational clinician scientist and leader in implementation science in the care of vulnerable older adults.