Department of Neurology, University of Colorado School of Medicine, Aurora, CO, USA.
Department of Neurology, University of California, San Francisco, CA, USA.
Parkinsonism Relat Disord. 2020 Aug;77:5-10. doi: 10.1016/j.parkreldis.2020.05.036. Epub 2020 Jun 10.
Our understanding of the determinants of quality of life (QOL) in people living with Parkinson's disease and related disorders (PDRD) has grown remarkably in the past decade. However, several areas remain understudied including determinants of general vs. health-related QOL, determinants in high-need patients, drivers of perceptions of caregivers vs. patients, and exploration of potential determinants outside of the traditional medical model.
This was a cross-sectional study of 210 PDRD patients and 175 caregivers who completed a battery of measures regarding general QOL (QOL-Alzheimer's disease; QOL-AD), health-related QOL (Parkinson's disease Questionnaire; PDQ-39), cognitive function, mood, grief, spiritual wellbeing, symptom burden, disease severity, disease stage, overall function, socioeconomic status, and healthcare utilization. Elastic net regularization modeling of variables significantly associated with our outcomes of interest were performed to determine predictors of general QOL, compare predictors of general vs. health-related QOL, and compare predictors of patient and caregiver perspectives on patient general QOL.
General QOL was associated with spiritual wellbeing, depression, cognitive function, presence of a caregiver, and recent emergency department visits. In contrast, health-related QOL was associated with grief, symptom burden, income, disease stage, and utilization of counseling services. Caregiver ratings of patient general QOL were associated with patient symptom burden, patient grief, patient global function, caregiver burden, and caregiver spiritual wellbeing.
There are notable differences in the predictors of general QOL, health-related QOL and caregiver perspectives on patient general QOL. These differences have important implications for clinical research and models of clinical care.
在过去的十年中，我们对帕金森病及相关疾病患者生活质量（QOL）决定因素的理解有了显著提高。然而，仍有几个领域研究不足，包括一般 QOL 与健康相关 QOL 的决定因素、高需求患者的决定因素、照顾者与患者感知的驱动因素，以及探索传统医疗模式之外的潜在决定因素。
这是一项对 210 名 PDRD 患者和 175 名照顾者进行的横断面研究，他们完成了一系列关于一般 QOL（阿尔茨海默病 QOL 量表；QOL-AD）、健康相关 QOL（帕金森病问卷；PDQ-39）、认知功能、情绪、悲伤、精神健康、症状负担、疾病严重程度、疾病分期、整体功能、社会经济状况和医疗保健利用的措施。对与我们感兴趣的结果显著相关的变量进行弹性网络正则化建模，以确定一般 QOL 的预测因素，比较一般 QOL 与健康相关 QOL 的预测因素，并比较患者和照顾者对患者一般 QOL 的看法的预测因素。
一般 QOL 与精神健康、抑郁、认知功能、照顾者的存在和最近的急诊就诊有关。相比之下，健康相关 QOL 与悲伤、症状负担、收入、疾病阶段和咨询服务的利用有关。照顾者对患者一般 QOL 的评分与患者的症状负担、患者的悲伤、患者的整体功能、照顾者的负担和照顾者的精神健康有关。
一般 QOL、健康相关 QOL 和照顾者对患者一般 QOL 的看法的预测因素存在显著差异。这些差异对临床研究和临床护理模式具有重要意义。
