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

许多居住在社区的阿尔茨海默氏病和相关痴呆症患者以及轻度认知障碍患者在生命的最后一年接受积极的医疗干预，尽管这种护理对他们的生活质量或生存的益处尚不确定。研究已经引起了人们的关注，这种护理可能与患者的目标和价值观不一致，甚至可能与更差的护理质量有关。这些结果突出了ACP在其病程早期的重要性。不幸的是，很少有认知障碍的老年人实际上参加ACP，而他们仍然保留决策能力。因此，人们越来越认识到，改善AD/ADRD或MCI患者的目标导向护理需要在疾病过程的早期更加关注ACP。1，2患者门户网站可以是一种创新的方式，可以让患者在已经紧张的简短临床访视之外参与ACP，并允许轻松记录ACP愿望。研究表明，使用基于门户的ACP工具沿着激励性电子信息，是改进ACP和文件编制工作的切实可行的方法;但在AD/ADRD或MCI患者中研究不足。3 -8本研究提案的中心假设是，发送基于用户友好门户的ACP工具（ACPdSmart）加上在常规初级保健访视之前通过患者门户网站发送的激励信息，将改善ACP在AD/ADRD或MCI患者中的覆盖率和采用率。这将通过以下具体目标来实现：（1）在患有AD/ADRD或MCI的社区居民及其护理伙伴中采用以用户为中心的设计方法进行可用性测试，以提高ACPdSmart门户工具的用户友好性;（2）在患者门户网站内对ACPdSmart工具进行试点测试，并辅以激励性信息，以提高ACP在社区中的覆盖率和采用率-患有AD/ADRD或MCI的居住者;（3）评估ACPdSmart干预措施在采用者和非采用者中的可接受性、适当性和实施障碍。PI将利用优秀的研究环境和实施科学，临床信息学和定性分析专家的指导团队。在他们的指导下，通过教学课程和实践经验，PI将获得实施科学，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的必要培训，成为独立的翻译临床医生科学家。该提案将为R 01奠定基础，以在一项务实的、多中心的、群集随机试验中测试基于门户网站的ACPdSmart干预。这个指导以患者为导向的研究职业发展奖（K23）将促进我们对有效实施策略的理解，以改善AD/ADRD或MCI患者的ACP，并将成为PI实现长期目标的及时催化剂。

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.