Feasibility and Acceptability of a Multifaceted Observational Protocol to Investigate Lucidity in Advanced Dementia.
Feasibility and Acceptability of a Multifaceted Observational Protocol to Investigate Lucidity in Advanced Dementia.
复制标题
研究晚期痴呆症清醒状态的多方面观察方案的可行性和可接受性。
DOI：
10.1097/wad.0000000000000615
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发表时间：
2024
影响因子：
2.1
通讯作者：
Gilmore-Bykovskyi,Andrea
中科院分区：
文献类型：
--
作者：
Coulson,Alison;Benson,Clark;Fehland,Jess;Dillon,Kayla;Mueller,Kimberly;Gilmore-Bykovskyi,Andrea
目的：清醒发作(ELS)的特征是自发的、短暂的能力恢复，在包括晚期痴呆在内的各种神经系统疾病中都有报道。尽管这些事件意义重大，但现有的研究仅限于回顾报道。方法：这项初步研究确定了在临终关怀中捕获、表征和验证晚期痴呆症患者ELS的多方面观察方案的可行性和可接受性。可行性是通过招生/保留率、视频观察的工作量/可用性评估和数据处理程序来衡量的，以促进衡量语言和非语言特征，以确定EL的特征。结果：研究程序在临床医生(N=49)和照顾者(N=16)参与者中被认为是高度可接受的，表现出高于预期的观察持续时间阈值。患者参与者(N=6)的登记和保留率分别为100%和84%。培训后工作量和可用性指标表现出低破坏性和高易用性。讨论：在临终关怀中对晚期痴呆患者进行纵向视频观察以检测清晰度是可行的，并具有很高的接受性。ELS特征的多维、时间编码是可行的，但需要大量的时间。
Objective:Episodes of lucidity (ELs), characterized by spontaneous, transient recovery of abilities, are reported across neurological conditions, including advanced dementia. Despite the significance of these events, existing research is limited to retrospective reports. Approaches to prospectively capturing and characterizing ELs in dementia are lacking.Methods:This pilot study determined the feasibility and acceptability of a multifaceted observational protocol to capture, characterize, and validate ELs in individuals with advanced dementia in hospice. Feasibility was measured through enrollment/retention rates, workload/usability assessment of video observation, and data processing procedures to facilitate the measurement of verbal and nonverbal features for EL characterization. The acceptability of observation and informant validation procedures was qualitatively examined with clinician and family caregiver participants.Results:Study procedures were endorsed as highly acceptable among clinician (N= 49) and caregiver (N= 16) participants, demonstrating higher than anticipated thresholds for observation duration. Enrollment and retention rates for patient participants (N= 6) were 100% and 84%, respectively. Workload and usability measures demonstrated low disruptiveness and high ease of use after training.Discussion:Longitudinal video observation among individuals with advanced dementia in hospice care for the detection of lucidity was feasible and highly acceptable. Multidimensional, temporal coding of features of ELs is feasible but time-intensive.