亨廷顿舞蹈症患者及其照料者的生活质量
Patient and caregiver quality of life in Huntington's disease.
作者信息
Ready Rebecca E, Mathews Melissa, Leserman Anne, Paulsen Jane S
机构信息
Department of Psychology, University of Massachusetts, Amherst, Massachusetts 01003, USA.
出版信息
Mov Disord. 2008 Apr 15;23(5):721-6. doi: 10.1002/mds.21920.
Abstract
Little is known about subjective perceptions of quality of life (QOL) in Huntington's disease (HD). The current study determined correlates of patient and caregiver QOL and assessed change over time. Participants were 22 patient-caregiver dyads, who rated QOL at baseline and 6 months later. Overall, patients' functional and cognitive impairment were significantly correlated with patient and caregiver QOL. Neuropsychiatric symptoms had differential impact on patient and caregiver QOL. Furthermore, when patients recalled their QOL about a previous time, their recall may have been negatively biased. Clinical implications of results are discussed. Future work is needed because subjective QOL is an important outcome measure in therapeutic trials.
摘要
关于亨廷顿舞蹈症（HD）患者生活质量（QOL）的主观认知，我们了解甚少。本研究确定了患者和照料者生活质量的相关因素，并评估了随时间的变化情况。研究参与者为22对患者-照料者组合，他们在基线时和6个月后对生活质量进行了评分。总体而言，患者的功能和认知障碍与患者及照料者的生活质量显著相关。神经精神症状对患者和照料者生活质量的影响存在差异。此外，当患者回忆其之前某段时间的生活质量时，他们的回忆可能存在负性偏差。本文讨论了研究结果的临床意义。鉴于主观生活质量是治疗试验中的一项重要结果指标，未来仍需开展相关工作。
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