Background:

Patients in the late stages of parkinsonism are highly dependent on others in their self-care and activities of daily living. However, few studies have assessed the physical, psychological and social consequences of caring for a person with late-stage parkinsonism.

Patients and methods:

Five hundred and six patients and their caregivers from the Care of Late Stage Parkinsonism (CLaSP) study were included. Patients’ motor and non-motor symptoms were assessed using the UPDRS and Non-motor symptom scale (NMSS), Neuropsychiatric inventory (NPI-12), and caregivers’ health status using the EQ-5D-3 L. Caregiver burden was assessed by the Zarit Burden Interview (ZBI).

Results:

The majority of caregivers were the spouse or life partner (71.2%), and were living with the patient at home (67%). Approximately half of caregivers reported anxiety/depression and pain/discomfort (45% and 59% respectively). The factors most strongly associated with caregiver burden were patients’ neuropsychiatric features on the total NPI score (r = 0.38, p < 0.0001), total NMSS score (r = 0.28, p < 0.0001), caring for male patients and patients living at home. Being the spouse, the hours per day assisting and supervising the patient as well as caregivers’ EQ-5D mood and pain scores were also associated with higher ZBI scores (all p < 0.001).

Conclusion:

The care of patients with late stage parkinsonism is associated with significant caregiver burden, particularly when patients manifest many neuropsychiatric and non-motor features and when caring for a male patient at home.

中文翻译：

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晚期帕金森症的照顾者负担及其关联

背景：

帕金森症晚期患者的自我保健和日常生活活动高度依赖他人。然而，很少有研究评估照顾晚期帕金森症患者的身体、心理和社会后果。

患者和方法：

包括来自晚期帕金森病护理 (CLaSP) 研究的 506 名患者及其护理人员。使用 UPDRS 和非运动症状量表 (NMSS) 评估患者的运动和非运动症状、使用 EQ-5D-3 L 评估护理人员的健康状况和使用 EQ-5D-3 L 评估护理人员的健康状况。扎里特负担访谈（ZBI）。

结果：

大多数照顾者是配偶或生活伴侣（71.2%），并且与患者一起住在家里（67%）。大约一半的护理人员报告了焦虑/抑郁和疼痛/不适（分别为 45% 和 59%）。与照顾者负担最密切相关的因素是患者在 NPI 总分 (r = 0.38, p < 0.0001)、NMSS 总分 (r = 0.28, p < 0.0001)、照顾男性患者和居家患者方面的神经精神特征. 作为配偶，每天协助和监督患者的时间以及照顾者的 EQ-5D 情绪和疼痛评分也与较高的 ZBI 评分相关（均p < 0.001）。

结论：

晚期帕金森病患者的护理与护理人员的沉重负担相关，特别是当患者表现出许多神经精神和非运动特征时以及在家中照顾男性患者时。