Schrag A, Selai C, Quinn N, Hobart J
University Department of Clinical Neurosciences, Royal Free and University College Medical School, Sobell Department of Motor Neuroscience and Movement Disorders, London, UK. a.
Neurocase. 2005 Aug;11(4):246-9. doi: 10.1080/13554790590963068.
The development of psychometrically sound health-related quality of life (Hr-QoL) instruments has made it possible to assess subjectively experienced Hr-QoL quantitatively, and to incorporate Hr-QoL as a measure in medical research and clinical trials. Hr-QoL in patients with progressive supranuclear palsy (PSP) has been measured using generic (not disease-specific) instruments, or Parkinson's disease-specific scales. We give an overview of the development of a disease-specific Hr-QoL instrument for patients with PSP. Based on interviews with 27 patients with PSP a preliminary Hr-QoL instrument was developed and administered to over 300 people with PSP in the UK and US. Following psychometric analysis a rating scale with a physical and a mental subscale emerged. In this patient sample, both subscales satisfied criteria for scaling assumptions, acceptability, reliability and validity (correlations with other measures consistent with a priori hypotheses). The psychometric properties of this questionnaire are undergoing further evaluation.
心理测量学上可靠的健康相关生活质量（Hr-QoL）工具的发展，使得定量评估主观体验的Hr-QoL成为可能，并将Hr-QoL纳入医学研究和临床试验的一项衡量指标。进行性核上性麻痹（PSP）患者的Hr-QoL已使用通用（非疾病特异性）工具或帕金森病特异性量表进行测量。我们概述了一种针对PSP患者的疾病特异性Hr-QoL工具的开发情况。基于对27名PSP患者的访谈，开发了一个初步的Hr-QoL工具，并在美国和英国对300多名PSP患者进行了应用。经过心理测量分析，出现了一个具有身体和精神两个子量表的评定量表。在这个患者样本中，两个子量表均满足量表假设、可接受性、可靠性和有效性的标准（与其他测量的相关性与先验假设一致）。该问卷的心理测量特性正在接受进一步评估。
