Helping the helpers: User-centered technology to aid caregiver management of medications for people with ADRD

项目总结 在全球近600万阿尔茨海默病及相关痴呆症(ADRD)患者中 美国人依赖非正式的(家人和朋友)照顾者来帮助管理他们的药物治疗。合并症是 在ADRD患者中非常常见，通常需要同时服用多种药物 以及复杂的药物治疗方案。照顾者通常未受过培训，资源不足，也得不到支持 执行ADRD患者所依赖的药物治疗任务。研究报告称，由照顾者协助的 药物管理与照顾者的负担和压力有关，而且可能不适当 三分之一的ADRD患者使用药物。不幸的是，大多数照顾者支持干预措施不能 解决ADRD照顾者在管理ADRD患者用药方面的角色。此外，少数人 针对ADRD照顾者解决药物问题的干预措施没有利用信息技术(IT)，尽管 国家认可信息技术在ADRD护理和护理中的重要作用。为了解决这一差距， 拟议的项目是开发一种基于IT的干预措施，以支持照顾者为人们管理药物 和ADRD在一起。根据NIH阶段模型，必须构建包括IT解决方案在内的行为干预 基于可靠的经验记录。因此，我们建议采用以用户为中心的设计的三个阶段来 介绍NIH阶段模型的前两个阶段。首先，我们将使用以用户为中心的设计组合 方法对管理药物的ADRD照顾者进行用户需求评估(阶段0) 患有ADRD的人。第二，我们将使用参与式共同设计(阶段IA)共同设计一个原型IT 与ADRD护理员协作进行干预，以支持护理员辅助的药物管理。 第三，我们将进行用户测试(阶段IB)，以测试使用ADRD进行IT干预原型的可行性 照顾者。以用户为中心的设计是以下方面的黄金标准(例如，FDA强制要求所有医疗设备) 通过让最终用户群体的代表参与设计产品，以更好地满足用户需求。 完成这些目标将导致混合疗效/有效性阶段3随机临床试验 干预措施，有能力测试服药依从性和安全性的变化，次要结果是 神经精神症状、急性护理利用率和照顾者负担。

PROJECT SUMMARY A majority of the nearly 6 million people living with Alzheimer's disease and related dementias (ADRD) in the US are reliant upon informal (family and friend) caregivers to help manage their medications. Comorbidities are highly prevalent in people with ADRD, often requiring the management of multiple simultaneous medications and complex medication regimens. Caregivers are often untrained, under-resourced, and unsupported to perform the medication tasks people with ADRD rely upon. Studies have reported that caregiver-assisted medication management is associated with caregiver burden and stress and potentially inappropriate medication use in a third of people with ADRD. Unfortunately, most caregiver support interventions do not address ADRD caregivers' roles in managing medications for people with ADRD. Moreover, the few interventions for ADRD caregivers addressing medications do not leverage information technology (IT), despite national recognition of IT's vital role in ADRD care and caregiving. To address this gap, the intent of the proposed project is to develop an IT-based intervention to support caregivers managing medications for people with ADRD. According to the NIH Stage Model, behavioral interventions including IT solutions must be built upon a solid empirical record. Therefore, we propose to employ the three phases of user-centered design to address the first two stages of the NIH Stage Model. First, we will use a combination of user-centered design methods to conduct a user needs assessment (Stage 0) of ADRD caregivers who manage medications for people with ADRD. Second, we will use participatory co-design (Stage IA) to co-design a prototype IT intervention to support caregiver-assisted medication management collaboratively with ADRD caregivers. Third, we will conduct user testing (Stage IB) to feasibility test the prototype IT intervention with ADRD caregivers. User-centered design is the gold standard (e.g., FDA-mandated for all medical devices) process for designing products by involving representatives of the end-user population to better address user needs. Completion of the aims will lead to a hybrid efficacy/effectiveness Stage 3 randomized clinical trial of the intervention, powered to test changes in medication adherence and safety, with secondary outcomes of neuropsychiatric symptoms, acute care utilization, and caregiver burden.