University of the Pacific, Stockton, CA, USA.
Workwell Foundation, Ripon, CA, USA.
Work. 2023;74(4):1187-1197. doi: 10.3233/WOR-220553.
Existing instruments often are inappropriate to measure the effects of post-exertional malaise (PEM) and post-exertional symptom exacerbation (PESE) on activities of daily living (ADLs). A validated questionnaire to measure self-reported ability with ADLs would advance research and clinical practice in conditions like myalgic encephalomyelitis and Long Covid.
Determine the measurement properties of the PEM/PESE Activity Questionnaire (PAQ).
The PAQ is adapted from the Patient Specific Functional Scale. Respondents rated three self-selected ADLs on two 0-100 scales, including current performance compared to (1) a 'good day' and (2) before illness. Respondents provided a Burden of Functioning rating on a 0-100 scale, anchored at 0 being the activity took "No time, effort, and resources at all" and 10 being "All of my time, effort, and resources." Respondents took the PAQ twice, completing a demographic questionnaire after the first PAQ and before the second PAQ. Descriptive statistics and intraclass correlation coefficients were calculated for each scale to assess test-retest reliability. Minimum detectable change outside the 95% confidence interval (MDC95) was calculated. Ceiling and floor effects were determined when the MDC95 for average and function scores crossed 0 and 100, respectively.
n = 981 responses were recorded, including n = 675 complete surveys. Test-retest reliability was generally fair to excellent, depending on function and scale. MDC95 values generally indicated scale responsiveness. Ceiling and floor effects were noted infrequently for specific functions.
The PAQ is valid, reliable, and sensitive. Additional research may explore measurement properties involving functions that were infrequently selected in this sample.
现有的工具通常不适合测量活动后不适（PEM）和活动后症状恶化（PESE）对日常生活活动（ADL）的影响。一个经过验证的问卷来衡量自我报告的 ADL 能力将推进肌痛性脑脊髓炎和长新冠等疾病的研究和临床实践。
确定 PEM/PESE 活动问卷（PAQ）的测量特性。
PAQ 改编自患者特定功能量表。受访者在两个 0-100 的量表上对三个自我选择的 ADL 进行评分，包括当前表现与（1）“好日子”和（2）生病前的比较。受访者在 0-100 的量表上对功能障碍评分，0 表示活动“完全不耗费时间、精力和资源”，10 表示“所有时间、精力和资源都投入了”。受访者两次完成 PAQ，第一次 PAQ 后和第二次 PAQ 前填写一份人口统计学问卷。为每个量表计算描述性统计和组内相关系数，以评估测试-重测信度。计算 95%置信区间外的最小可检测变化（MDC95）。当平均和功能评分的 MDC95 分别达到 0 和 100 时，确定上限和下限效应。
记录了 981 份应答，包括 675 份完整调查。测试-重测信度通常在功能和量表上是良好到优秀的。MDC95 值通常表明量表的反应性。在这个样本中，特定功能的上限和下限效应很少见。
PAQ 是有效、可靠和敏感的。进一步的研究可能会探索涉及该样本中很少选择的功能的测量特性。
