Shurer Jessica, Ivancic Margaret, Nesspor Vanessa, Schmidt Maria, Li Mingyuan, Lin Yi-Ting, Schumock Grant, Xu Richard, Sklerov Miriam, Pantelyat Alexander
CurePSP, Inc., United States.
Department of Neurology, University of North Carolina at Chapel Hill, United States.
Clin Park Relat Disord. 2024 Jul 17;11:100266. doi: 10.1016/j.prdoa.2024.100266. eCollection 2024.
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.
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.
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.
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.
进行性核上性麻痹（PSP）、皮质基底节综合征（CBS）和多系统萎缩（MSA）是罕见的神经退行性疾病，与病情快速进展相关，需要复杂的症状管理。随着这些非典型帕金森综合征的进展，照料责任显著增加，但迄今为止，这些综合征中的照料负担尚未得到广泛研究。
使用 Zarit 照料负担访谈量表（ZBI）评估在两个学术性运动障碍中心的专科跨学科诊所中临床诊断为 PSP、CBS 或 MSA 的患者的照料伙伴的负担。进行单变量和多变量回归分析以评估照料伙伴负担的横断面人口统计学和临床决定因素。
共有 139 名照料伙伴完成了 ZBI（59.0%为 PSP，28.1%为 MSA，12.9%为 CBS）。两个医疗中心的队列在所有变量上都相似。患者和照料伙伴的女性性别均与较高的 ZBI 得分独立相关。此外，与 PSP 和 CBS 相比，MSA 帕金森型与照料伙伴的总负担较低显著相关。
确定了非典型帕金森综合征中照料伙伴负担较高的几个决定因素，特别是性别和诊断。医疗保健专业人员在评估患者和照料伙伴的个性化需求并参考特定疾病资源时可以考虑这些信息。此外，本研究的方法和结果突出了进一步探索跨学科护理作为对非典型帕金森症患者进行全面评估和支持手段的潜力。
