Morley David, Dummett Sarah, Kelly Laura, Dawson Jill, Fitzpatrick Ray, Jenkinson Crispin
Health Services Research Unit, Nuffield Department of Population Health, University of Oxford, Oxford, UK.
Patient Relat Outcome Meas. 2016 Jun 15;7:73-80. doi: 10.2147/PROM.S96822. eCollection 2016.
There is growing interest in the management of long-term conditions and in keeping people active and participating in the community. Testing the effectiveness of interventions that aim to affect activities and participation can be challenging without a well-developed, valid, and reliable instrument. This study therefore aims to develop a patient-reported outcome measure, the Oxford Participation and Activities Questionnaire (Ox-PAQ), which is theoretically grounded in the World Health Organization's International Classification of Functioning, Disability, and Health (ICF) and fully compliant with current best practice guidelines.
Questionnaire items generated from patient interviews and based on the nine chapters of the ICF were administered by postal survey to 386 people with three neurological conditions: motor neuron disease, multiple sclerosis, and Parkinson's disease. Participants also completed the Medical Outcomes Study (MOS) 36-Item Short Form Health Survey (SF-36) and EQ-5D-5L.
Thus, 334 participants completed the survey, a response rate of 86.5%. Factor analysis techniques identified three Ox-PAQ domains, consisting of 23 items, accounting for 72.8% of variance. Internal reliability for the three domains was high (Cronbach's α: 0.81-0.96), as was test-retest reliability (intraclass correlation: 0.83-0.92). Concurrent validity was demonstrated through highly significant relationships with relevant domains of the MOS SF-36 and the EQ- 5D-5L. Assessment of known-groups validity identified significant differences in Ox-PAQ scores among the three conditions included in the survey.
Results suggest that the Ox-PAQ is a valid and reliable measure of participation and activity. The measure will now be validated in a range of further conditions, and additional properties, such as responsiveness, will also be assessed in the next phase of the instrument's development.
人们对长期疾病的管理以及让人们保持活跃并参与社区事务的关注度日益提高。在缺乏完善、有效且可靠的工具的情况下，测试旨在影响活动和参与度的干预措施的有效性可能具有挑战性。因此，本研究旨在开发一种患者报告的结局指标，即牛津参与和活动问卷（Ox-PAQ），该问卷在理论上以世界卫生组织的《国际功能、残疾和健康分类》（ICF）为基础，并完全符合当前的最佳实践指南。
通过邮政调查向386名患有三种神经系统疾病（运动神经元病、多发性硬化症和帕金森病）的患者发放了基于患者访谈并依据ICF的九个章节生成的问卷项目。参与者还完成了医学结局研究（MOS）36项简短健康调查（SF-36）和EQ-5D-5L。
共有334名参与者完成了调查，回复率为86.5%。因子分析技术确定了Ox-PAQ的三个领域，由23个项目组成，解释了72.8%的方差。三个领域的内部信度较高（Cronbach's α：0.81 - 0.96），重测信度也较高（组内相关系数：0.83 - 0.92）。通过与MOS SF-36和EQ-5D-5L的相关领域存在高度显著的关系证明了同时效度。已知群体效度评估确定了调查中包含的三种疾病在Ox-PAQ得分上存在显著差异。
结果表明，Ox-PAQ是一种有效且可靠的参与和活动测量工具。该测量工具现在将在一系列其他疾病中进行验证，并且在该工具开发的下一阶段还将评估其他特性，如反应度。
