Perry Sarah E, Borders James C, Dakin Avery E, Troche Michelle S
Laboratory for the Study of Upper Airway Dysfunction, Teachers College, Columbia University, New York, NY, USA.
University of Canterbury Rose Centre for Stroke Recovery & Research at St. George's Medical Centre, Christchurch, New Zealand.
Dysphagia. 2022 Jun;37(3):523-532. doi: 10.1007/s00455-021-10299-z. Epub 2021 May 15.
Caring for a family member with dysphagia can negatively impact caregiver wellbeing, although little is known about how dysphagia severity or specific symptoms influence this. The purpose of this study was to examine how objective measures of dysphagia in people with Parkinson's disease influenced their caregivers' quality of life. Fifty caregivers (mainly spouses) of people with Parkinson's disease completed a caregiver quality of life survey. Results were compared to medical chart reviews, interviews, and instrumental evaluations of swallowing from the care recipients. Outcomes included caregiver quality of life score, ratings of airway invasion and pharyngeal residue, and Parkinson's disease duration. Descriptive and regression analyses were completed. All caregivers reported reduced quality of life, with 28% having severely disturbed adaptation. Every care recipient with Parkinson's disease demonstrated airway invasion and/or pharyngeal residue. Together, the combination of older care recipient age and longer disease duration was associated with poorer caregiver quality of life [adj. R = 0.10-0.12, p = 0.03-0.4]. Neither airway invasion nor pharyngeal residue was related to caregiver quality of life (p > 0.05). Findings confirmed that caregivers of people with Parkinson's disease and dysphagia experience reduced quality of life; however, current methods of assessing caregivers' quality of life may not adequately account for dysphagia-specific burden. Results highlight the urgent need for the development of dysphagia-specific assessments of caregivers' quality of life to facilitate identification of high-risk caregivers and aid the development of support systems to improve health outcomes for caregivers and care recipients.
照顾吞咽困难的家庭成员会对照顾者的幸福感产生负面影响，尽管对于吞咽困难的严重程度或具体症状如何影响这一点知之甚少。本研究的目的是探讨帕金森病患者吞咽困难的客观测量指标如何影响其照顾者的生活质量。50名帕金森病患者的照顾者（主要是配偶）完成了照顾者生活质量调查。将结果与病历审查、访谈以及受照顾者的吞咽仪器评估进行比较。结果包括照顾者生活质量得分、气道侵犯和咽部残留的评级以及帕金森病病程。完成了描述性和回归分析。所有照顾者均报告生活质量下降，28%的人适应严重受损。每位帕金森病受照顾者均表现出气道侵犯和/或咽部残留。总体而言，受照顾者年龄较大和病程较长这两个因素共同与照顾者较差的生活质量相关[调整后R = 0.10 - 0.12，p = 0.03 - 0.4]。气道侵犯和咽部残留均与照顾者生活质量无关（p > ）。研究结果证实，帕金森病合并吞咽困难患者的照顾者生活质量下降；然而，目前评估照顾者生活质量的方法可能无法充分考虑吞咽困难特有的负担。结果凸显了迫切需要开发针对照顾者生活质量的吞咽困难特异性评估方法，以促进识别高危照顾者，并有助于开发支持系统，以改善照顾者和受照顾者的健康结局。
