帕金森病丘脑底核脑深部电刺激术后的照护者负担及其决定因素：一项横断面长期随访研究

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中文摘要

背景： 帕金森病（PD）是一种进行性神经退行性疾病，即使在脑深部电刺激（DBS）后也会导致功能依赖不断增加。尽管DBS改善了运动结局，但其对照护者负担的长期影响仍知之甚少。
目的： 我们的目的是评估丘脑底核（STN）-DBS后的照护者负担，并确定在不同术后时间点与负担相关的患者和照护者相关因素。
方法： 开展了一项横断面研究，纳入在一家三级中心接受STN-DBS的PD患者的照护者，并按术后时间分层（2-3年、5-6年、10-11年和≥15年）。照护者完成了Zarit负担访谈、医院焦虑抑郁量表以及研究者开发的问卷。患者临床数据，包括统一帕金森病评定量表（UPDRS）第III部分评分，从医疗记录中获取。进行了组间比较和多变量回归分析，以确定与照护者负担相关的因素。
结果： 共纳入88对患者-照护者。照护者主要为女性（62.5%），平均年龄为60.0±12.3岁。照护者负担为轻度至中度，但随着术后时间延长而独立增加。较高的负担与较年轻的照护者年龄、较高的焦虑和抑郁评分、更长的照护时间、更少的个人时间以及患者相关因素（包括吞咽困难、痴呆和男性性别）相关。运动严重程度（UPDRS III、跌倒、姿势不稳）与照护者负担无关。大多数照护者认为STN-DBS有益，并会再次选择手术。
结论： 照护者负担随着STN-DBS后时间延长而增加，并与痴呆、吞咽困难和照护者相关因素相关，但与运动严重程度无关。若干相关因素可能具有可改变性，支持将系统性照护者评估和针对性干预作为长期PD管理的一部分。

英文摘要

BACKGROUND: Parkinson's disease (PD) is a progressive neurodegenerative disorder, leading to increasing functional dependence even after deep brain stimulation (DBS). Although DBS improves motor outcomes, its long-term impact on caregiver burden remains poorly understood.
OBJECTIVES: Our aims were to evaluate caregiver burden after subthalamic nucleus (STN)-DBS and identify patient- and caregiver-related factors associated with burden across different postoperative time points.
METHODS: A cross-sectional study of caregivers of PD patients who underwent STN-DBS at a tertiary center, stratified by time since surgery (2-3, 5-6, 10-11, and ≥15 years), was conducted. Caregivers completed the Zarit Burden Interview, Hospital Anxiety and Depression Scale, and an investigator-developed questionnaire. Patient clinical data, including the Unified Parkinson's Disease Rating Scale (UPDRS), Part III, scores, were obtained from medical records. Group comparisons and multivariable regression analyses were performed to identify factors associated with caregiver burden.
RESULTS: Eighty-eight patient-caregiver pairs were included. Caregivers were predominantly female (62.5%), with a mean age of 60.0 ± 12.3 years. Caregiver burden was mild to moderate but increased independently with longer time postsurgery. Higher burden was associated with younger caregiver age, higher anxiety and depression scores, greater caregiving time, less personal time, and patient-related factors, including dysphagia, dementia, and male sex. Motor severity (UPDRS III, falls, postural instability) was not associated with caregiver burden. Most caregivers considered STN-DBS beneficial and would choose surgery again.
CONCLUSIONS: Caregiver burden increased with longer time after STN-DBS and was associated with dementia, dysphagia, and caregiver-related factors but not with motor severity. Several associated factors are potentially modifiable, supporting systematic caregiver assessment and targeted interventions as part of long-term PD management.