肌萎缩侧索硬化症患者及其照顾者的生活质量观点

Quality of Life Perspectives of People With Amyotrophic Lateral Sclerosis and Their Caregivers.

作者信息

Johnson Stephanie, Alonso Bryant, Faulkner Katie, Roberts Haley, Monroe Britton, Lehman Leigh, Kearney Pamalyn

机构信息

Stephanie Johnson, MHS, OTR/L, is Assistant Professor, Department of Occupational Therapy, College of Allied Health Sciences, Augusta University, Augusta, GA;

Bryant Alonso, OTR/L, is Occupational Therapist, Valdosta Pediatric Therapy Services, Valdosta, GA.

出版信息

Am J Occup Ther. 2017 May/Jun;71(3):7103190010p1-7103190010p7. doi: 10.5014/ajot.2017.024828.

DOI:10.5014/ajot.2017.024828

PMID:28422627

Abstract

This study explored differences in perspectives on quality of life (QOL) between people affected by amyotrophic lateral sclerosis (ALS) and their caregivers. QOL is often thought of as related to physical limitations, without consideration of other factors (e.g., cognitive, emotional) that may be stronger predictors of QOL in people with long-term degenerative diseases. Because QOL is complex and influenced by multiple factors, people with ALS and their caregivers may have different perspectives on what constitutes QOL. This study investigated potential discrepancies in QOL perspectives between people with ALS and their caregivers. Thirty dyads from the Augusta University Health ALS Clinic completed a measure of QOL, and we compared the results and identified patterns. The most prominent finding was that members of the dyads misunderstood the mental experiences of one another.

摘要

本研究探讨了肌萎缩侧索硬化症（ALS）患者及其照护者对生活质量（QOL）看法的差异。生活质量通常被认为与身体限制有关，而未考虑其他因素（如认知、情感因素），这些因素可能是长期退行性疾病患者生活质量的更强预测指标。由于生活质量很复杂且受多种因素影响，ALS患者及其照护者对于生活质量的构成可能有不同看法。本研究调查了ALS患者及其照护者在生活质量看法上的潜在差异。来自奥古斯塔大学健康ALS诊所的30对受试者完成了一项生活质量测评，我们比较了结果并确定了模式。最显著的发现是，这些配对中的成员误解了彼此的心理体验。