美国成人日间服务中心目前报告的痴呆症患者及照料者相关结局。
Dementia patient and caregiver relevant outcomes currently being reported by adult day service centers in the United States.
作者信息
Sadarangani Tina, Anderson Keith, Westmore Megan Rose, Zhong Jie
机构信息
New York University Rory Meyers College of Nursing New York New York USA.
The University of Texas at Arlington School of Social Work Arlington Texas USA.
出版信息
Alzheimers Dement (N Y). 2022 Jun 27;8(1):e12310. doi: 10.1002/trc2.12310. eCollection 2022.
BACKGROUND
Approximately one third of adults in adult day services (ADS) centers have Alzheimer's disease (AD) and AD-related dementias (ADRD). Understanding of the impact and effectiveness of ADS on persons living with dementia (PLWD) is limited by a lack of patient and caregiver relevant outcomes (PCRO) data. We identified PCROs collected at ADS sites in states that mandate serial data collection and examined the degree to which these data align with established Dementia Care Practice Recommendations (DCPR) and PCROs used in other areas of long-term care.
METHODS
We conducted an item analysis of regulatory forms used by ADS. Consistent with the methodology used by the Imbedded Pragmatic AD/ADRD Clinical Trials (IMPACT) Collaboratory for PCROs collected in other long-term care settings, we created a matrix informed by DCPR. We matched each item in regulatory forms reflecting a PCRO to one of the seven DCPR domains as well as to the 53 PCROs from other long-term care sectors.
RESULTS
Ten states routinely collect outcome data in ADS. Among these, 80% assess cognitive function. All 10 states capture PLWD's ability to complete activities of daily living. Presence and frequency of behavioral symptoms were collected by 80% of states. Very few or, in some cases, none of the 10 states, collected PCROs related to care planning and coordination, education, social support, and/or family caregiver burden and support.
DISCUSSION
Lack of standardized collection of PCROs hampers researchers' understanding of ADS. The vast majority of PCROs collected center on participants' physical health; conversely, data on socialization, social support, and caregiver well-being, which are purportedly the most impactful services offered by ADS centers, are rarely collected. ADS would be well served to focus on these outcome domains as the resulting data could paint a more complete picture of the holistic impact of ADS on PLWD and their caregivers.
背景
成人日间服务（ADS）中心约三分之一的成年人患有阿尔茨海默病（AD）及与AD相关的痴呆症（ADRD）。由于缺乏患者及照料者相关结局（PCRO）数据，对于ADS对痴呆症患者（PLWD）的影响及有效性的了解有限。我们确定了在要求进行系列数据收集的州的ADS场所收集的PCRO，并研究了这些数据与既定的痴呆症护理实践建议（DCPR）以及长期护理其他领域所使用的PCRO的一致程度。
方法
我们对ADS使用的监管表格进行了项目分析。与嵌入式实用AD/ADRD临床试验（IMPACT）协作组在其他长期护理环境中收集PCRO所使用的方法一致，我们创建了一个以DCPR为依据的矩阵。我们将监管表格中反映PCRO的每个项目与七个DCPR领域之一以及其他长期护理部门的53个PCRO进行匹配。
结果
有10个州定期收集ADS的结局数据。其中，80%评估认知功能。所有10个州都记录了PLWD完成日常生活活动的能力。80%的州收集了行为症状的存在情况及发生频率。10个州中很少有（在某些情况下甚至没有）收集与护理计划与协调、教育、社会支持和/或家庭照料者负担及支持相关的PCRO。
讨论
缺乏PCRO的标准化收集妨碍了研究人员对ADS的理解。所收集的绝大多数PCRO都集中在参与者的身体健康方面；相反，关于社交、社会支持和照料者福祉的数据很少被收集，而这些据说是ADS中心提供的最具影响力的服务。ADS若能关注这些结局领域将大有裨益，因为由此产生的数据可以更全面地描绘ADS对PLWD及其照料者的整体影响。
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