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

疼痛识别和沟通工具包：支持 ADRD 患者家庭护理人员的培训计划

• 批准号: 10570403
• 负责人: Catherine Riffin
• 金额: $ 84.91万
• 依托单位: WEILL MEDICAL COLL OF CORNELL UNIV
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-02-15 至 2028-01-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10570403
• 关键词: Address; Affect; Alzheimer' s disease related dementia; Analgesics; Area; Articulation; Basic Science; Behavior assessment; Behavioral; Behavioral Symptoms; Belief; Black race; Caregivers; Caring; Clinical; Clinical Trials; Communication; Communication impairment; Communities; Confusion; Dementia caregivers; Detection; Development; Distress; Elderly; Ethnic Origin; Face; Family; Family Caregiver; Frustration; Funding; Future; Health Personnel; Hispanic; Impaired cognition; Individual; Infrastructure; Institutionalization; Intervention; Knowledge; Long-Term Care; Manuals; Measurable; Medicine; Mental Depression; Minority Groups; Modeling; Nerve Degeneration; New York; Outcome Study; Pain; Pain Assessment Tool; Pain Measurement; Pain management; Patient Self-Report; Patients; Persistent pain; Persons; Physical Function; Play; Population; Practice Guidelines; Quality of life; Race; Randomized; Recommendation; Regimen; Research; Research Personnel; Role; Science; Self Efficacy; Services; Severities; Site; Social Workers; Social isolation; Techniques; Training; Training Programs; United States National Institutes of Health; Work; acceptability and feasibility; attentional control; behavior change; care delivery; care recipients; caregiver education; caregiving; dementia caregiving; effective intervention; efficacy evaluation; efficacy testing; ethnic diversity; ethnic minority population; evidence base; experience; family support; health literacy; improved; innovation; intervention refinement; multi-component intervention; multi-racial; novel; pain model; pain symptom; pharmacologic; pilot test; pilot trial; pragmatic trial; precision medicine; primary outcome; programs; psychological symptom; racial diversity; racial minority population; routine care; routine practice; secondary outcome; skills; socioeconomics; theories; therapy development; verbal; virtual

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.

项目摘要 多达60％的老年人患有阿尔茨海默氏病和相关痴呆症（ADRD）的老年人受到了痛苦 疼痛，几乎一半经历了与疼痛有关的活动限制。尽管最佳实践指南仍在要求 常规的ADRD患者的疼痛评估，疼痛严重发现不足，并且在此管理不佳 人口。 ADRD患者识别和治疗疼痛的主要障碍受损 沟通。随着ADRD的进展，神经退行性的变化阻碍了个人理解的能力 并在口头上表达他们的不适。在这种情况下，可靠的痛苦自我报告是不可行的，并且 建议进行行为评估。非正式（家庭）护理人员的位置非常适合检测疼痛和 鉴于他们广泛参与护理活动，促进与ADRD的人的管理。然而， 看护人在这些领域几乎没有指导或培训。应对ADRD的挑战 护理人员在认识和交流痛苦时面对PI（Riffin）和她的跨学科团队 共同注册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）。行为改变和痛苦交流的理论和 包括（a）管理观察性疼痛评估工具的培训，（b）有效疼痛指导 沟通，以及（c）通过常规练习来建立护理人员的技能。该团队的NIA资助试点审判 有一个大致和种族多样化的护理人员（14％黑人，15％的西班牙裔，8％多种族） 证明了PICT的可行性和可接受性，以及对看护人沟通的初步影响 与医疗保健提供者。拟议的R01通过使用实验医学建立在这项先前研究的基础上 基于行为改变科学的方法，以评估PITS的效率，行动机制， 以及II期临床试验中的潜在主持人。它将利用基于社区的基础架构 纽约的托管长期护理（MLTC）计划，具有广泛的社会经济和种族多样性为（1） 确定PICT在护理人员的疼痛识别和沟通方面的效率（主要结果）， 看护人的痛苦和烧伤；患者的身体机能，行为灾难，疼痛变化 治疗或方案以及制度化（次要结果），（2）确定患者和护理人员 可能适应PICT对研究结果影响的因素，以及（3）评估机制 （理论上的变量）PICT会影响研究结果。总体而言，这项研究代表了 解决患有ADRD的人的疼痛不足和管理不足的关键步骤， 支持大量隐藏但至关重要的护理人员劳动力，并为未来奠定基础 多站点务实的试验。