The Pain Identification and Communication Toolkit: A Training Program to Support Family Caregivers of Persons with ADRD

项目摘要 高达60%的老年人患有阿尔茨海默病和相关痴呆症（ADRD）， 疼痛，近一半的人经历与疼痛有关的活动限制。尽管最佳实践指南要求 ADRD患者的常规疼痛评估中，疼痛严重未被检测到，且管理不善。 人口识别和治疗ADRD患者疼痛的主要障碍是受损 通信随着ADRD的进展，神经退行性变化阻碍了个体理解 并口头表达他们的不适。在这种情况下，可靠的自我报告疼痛是不可行的， 建议进行行为评估。非正式（家庭）照顾者能够很好地发现疼痛， 促进ADRD患者的管理，因为他们广泛参与护理活动。然而，在这方面， 照顾者在这些方面几乎得不到任何指导或培训。为了应对ADRD面临的挑战， 护理人员在认识和沟通疼痛时面临的问题，PI（Riffin）和她的跨学科团队 共同研究者开发了一种手动的多组分干预，疼痛识别和 通信工具包。PICT是由行为改变和疼痛沟通理论所告知的， 包括（a）管理观察性疼痛评估工具的培训，（B）有效疼痛的辅导， 沟通，以及（c）通过日常实践培养照顾者的技能。该团队的NIA资助的试点试验 有一个种族和民族多样化的照顾者群体（14%黑人，15%西班牙裔，8%多种族） 证明了PICT的可行性和可接受性，以及对照顾者沟通的初步影响 医疗保健提供者。拟议的R 01通过使用实验医学建立在这项先前研究的基础上。 方法，在行为改变科学的基础上，评估PICT的功效，作用机制， 和潜在的调节剂。它将利用社区基础设施， 管理长期护理（MLTC）计划在纽约与广泛的社会经济和种族多样性（1） 确定PICT对护理人员疼痛识别和沟通的有效性（主要结局）， 照顾者的痛苦和负担;患者的身体功能，行为障碍，疼痛的变化 治疗或方案，以及机构化（次要结局），（2）确定患者和护理人员 可能缓和PICT对研究结果影响的因素，以及（3）评估机制 （理论推导的变量），PICT通过这些变量影响研究结果。总的来说，这项研究代表了一个 是解决ADRD患者疼痛检测不足和管理不足的关键一步， 支持大部分隐藏但重要的ADRD护理人员，并为未来奠定基础 多地点实用审判。

PROJECT SUMMARY Up to 60% of older persons with Alzheimer’s disease and related dementias (ADRD) suffer from bothersome pain and nearly half experience pain-related activity limitations. Despite best-practice guidelines calling for routine pain assessment of persons with ADRD, pain is severely under-detected and poorly managed in this population. A major barrier to the identification and treatment of pain in persons with ADRD is impaired communication. As ADRD progresses, neurodegenerative changes impede individuals’ ability to understand and verbally articulate their discomfort. In such cases, reliable self-reports of pain are not feasible and behavioral assessment is recommended. Informal (family) caregivers are well situated to detect pain and facilitate management in persons with ADRD, given their extensive involvement in care activities. However, caregivers receive virtually no guidance or training in these areas. To address the challenges that ADRD caregivers face in recognizing and communicating about pain, the PI (Riffin) and her interdisciplinary team of Co-Investigators developed a manualized, multicomponent intervention, the Pain Identification and Communication Toolkit (PICT). PICT is informed by theories of behavior change and pain communication and includes (a) training in administering an observational pain assessment tool, (b) coaching in effective pain communication, and (c) building caregivers’ skills through routine practice. The team’s NIA-funded pilot trial with a racially and ethnically diverse group of caregivers (14% Black, 15% Hispanic, 8% multiracial) demonstrated the feasibility and acceptability of PICT, and preliminary impact on caregivers’ communication with healthcare providers. The proposed R01 builds on this prior research by using an Experimental Medicine approach, grounded in the Science of Behavior Change, to evaluate PICT’s efficacy, mechanisms of action, and potential moderators in a Stage II clinical trial. It will leverage the infrastructure of a community-based Managed Long-Term Care (MLTC) program in New York with wide socioeconomic and racial diversity to (1) determine the efficacy of PICT on caregivers’ pain recognition and communication (Primary Outcomes), caregivers’ distress and burden; patients’ physical function, behavioral disturbance, changes in pain treatments or regimens, and institutionalization (Secondary Outcomes), (2) identify the patient and caregiver factors that may moderate the effects of PICT on study outcomes, and (3) evaluate the mechanisms (theoretically-derived variables) by which PICT affects study outcomes. Overall, this research represents a critical step toward addressing the under-detection and under-management of pain in persons with ADRD, supporting the largely hidden but vital ADRD caregiver workforce, and laying the groundwork for a future multisite pragmatic trial.