关键词: Atypical parkinsonism Care partner burden Caregiving Corticobasal syndrome Multiple system atrophy Progressive supranuclear palsy

来  源:   DOI:10.1016/j.prdoa.2024.100266   PDF(Pubmed)

Abstract:
UNASSIGNED: Progressive supranuclear palsy (PSP), corticobasal syndrome (CBS), and multiple system atrophy (MSA) are rare neurodegenerative diseases associated with rapid decline and require complex symptom management. Caregiving responsibilities significantly increase with progression of these atypical Parkinsonian syndromes, yet care burden in these syndromes has not been researched extensively to date.
UNASSIGNED: The Zarit Burden Interview (ZBI) was used to assess burden in care partners of patients clinically diagnosed with PSP, CBS, or MSA seen in specialty interdisciplinary clinics at two academic movement disorders centers. Univariable and multivariable regression analyses were performed to evaluate cross-sectional demographic and clinical determinants of care partner burden.
UNASSIGNED: A total of 139 care partners completed the ZBI (59.0% PSP, 28.1% MSA, 12.9% CBS). Cohorts at both medical centers were similar across all variables. Female gender of both patients and care partners was independently associated with higher ZBI scores. Additionally, MSA-Parkinsonian type was significantly associated with lower total care partner burden compared to PSP and CBS.
UNASSIGNED: Several determinants of higher care partner burden in atypical Parkinsonian syndromes were identified, particularly female gender and diagnosis. Healthcare professionals can consider this information when assessing individualized needs of patients and care partners and referring to disease-specific resources. Additionally, this study\'s methods and results highlight the potential to further explore interdisciplinary care as a means of comprehensive evaluation and support for those with atypical Parkinsonism.
摘要:
进行性核上性麻痹(PSP),皮质基底综合征(CBS),多系统萎缩(MSA)是与快速衰退相关的罕见神经退行性疾病,需要复杂的症状管理。护理责任随着这些非典型帕金森病综合征的进展而显著增加,然而,迄今为止,这些综合征的护理负担尚未得到广泛研究。
Zarit负担访谈(ZBI)用于评估临床诊断为PSP的患者的护理伙伴的负担,CBS,或MSA在两个学术运动障碍中心的专业跨学科诊所中看到。进行了单变量和多变量回归分析,以评估护理伴侣负担的横断面人口统计学和临床决定因素。
共有139名护理合作伙伴完成了ZBI(59.0%PSP,28.1%MSA,12.9%CBS)。两个医疗中心的队列在所有变量中都相似。患者和护理伙伴的女性性别与较高的ZBI评分独立相关。此外,与PSP和CBS相比,MSA-Parkinsonian型与较低的总护理伴侣负担显着相关。
确定了非典型帕金森综合征中护理伴侣负担较高的几个决定因素,特别是女性性别和诊断。在评估患者和护理合作伙伴的个性化需求并参考特定疾病资源时,医疗保健专业人员可以考虑这些信息。此外,本研究的方法和结果凸显了进一步探索跨学科护理作为对非典型帕金森病患者的综合评估和支持手段的潜力。
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