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

项目总结 高达60%的患有阿尔茨海默病和相关痴呆(ADRD)的老年人患有令人烦恼的 疼痛和近一半的人经历与疼痛相关的活动限制。尽管最佳实践指南要求 ADRD患者的常规疼痛评估，在这种情况下，疼痛被严重低估和管理不善 人口。ADRD患者识别和治疗疼痛的一个主要障碍是受损 沟通。随着ADRD的进展，神经退行性变化阻碍了个人的理解能力 并口头表达他们的不适。在这种情况下，可靠的疼痛自我报告是不可行的，而且 建议进行行为评估。非正式的(家庭)照顾者处于良好的位置，能够察觉疼痛和 促进ADRD患者的管理，因为他们广泛参与护理活动。然而， 照顾者在这些领域几乎没有得到任何指导或培训。为了应对ADRD面临的挑战 护理者面对识别和沟通疼痛，PI(Riffin饰)和她的跨学科团队 合作研究人员开发了一种手动、多成分的干预方法，疼痛识别和 通信工具包(PICT)。皮克特受到行为改变和疼痛交流理论的启发， 包括：(A)使用观察性疼痛评估工具进行培训；(B)指导有效疼痛 (C)通过日常实践培养照料者的技能。该团队由NIA资助的试点试验 与种族和民族多元化的照顾者群体(14%的黑人，15%的西班牙裔，8%的混血) 论证了PICT的可行性和可接受性，以及对照顾者沟通的初步影响 与医疗保健提供者合作。建议的R01建立在这项先前研究的基础上，使用了一种实验医学 以行为改变科学为基础的方法，以评估职业技术和通信技术的有效性、作用机制、 和潜在的第二阶段临床试验的主持人。它将利用以社区为基础的 纽约的管理型长期护理(MLTC)计划，具有广泛的社会经济和种族多样性，以(1) 确定PICT在照顾者疼痛识别和沟通方面的效果(主要结果) 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，以及制度化(次要结果)，(2)确定患者和照顾者 可能缓和PICT对研究结果影响的因素，以及(3)评估机制 (理论派生变量)PICT影响研究结果的变量。总体而言，这项研究代表了 朝着解决ADRD患者疼痛检测和管理不足的关键一步， 支持在很大程度上隐藏但至关重要的ADRD护理人员队伍，并为未来奠定基础 多点务实试验。

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.