Young Carolyn A, Quincey Anne-Marie C, Wong Samantha M, Tennant Alan
a Department of Neurology , Walton Centre NHS Trust , Lower Lane , Liverpool , UK.
b ICF Unit , Swiss Paraplegic Research , Nottwil , Switzerland.
Disabil Rehabil. 2018 Mar;40(5):597-602. doi: 10.1080/09638288.2016.1260650. Epub 2016 Dec 15.
To design a disease-specific quality of life (QoL) questionnaire for people with post-polio syndrome (PPS).
Qualitative interviews were conducted with 45 people with PPS to identify themes and derive potential items reflecting impact upon QoL. After cognitive debriefing, these were made into a questionnaire pack along with comparative questionnaires and posted to 319 patients. The 271 (85%) returned questionnaires were subjected to exploratory factor analysis (EFA) and Rasch analysis.
A 25 item scale, the post-polio quality of life scale (PP-QoL), showed good fit to the Rasch model (conditional chi-square p = 0.156), unidimensionality (% t-tests 2.0: CI 0.7-3.8), and Cronbach's alpha of 0.87. With the latent estimate transformed to a 0-100 scale, the mean score was 56.9 (SD 18.5) with only 3.3% of respondents at the floor or ceiling of the scale. Test-retest reliability showed an intraclass correlation coefficient (ICC) (2.1) of 0.916, and correlation of 0.85.
The disease-specific PP-QoL demonstrated excellent reliability, appropriate concurrent validity, and satisfied the standards of the Rasch model. It enables examination of the impact of health status upon perceived QoL, and the impact of rehabilitation interventions. The scale is freely available for academic or not-for-profit users to improve research in this neglected, disabling condition. Implications for Rehabilitation In post-polio syndrome (PPS), existing work examines aspects of health-related quality of life (HRQoL), such as activity limitations. A disease-specific QoL measure would enable researchers to model the impact of health status, such as fatigue or mobility restrictions, upon QoL in PPS. The post-polio quality of life scale (PP-QoL) is based on the patients' lived experience, meets Rasch standards and is free for use for academic and not-for-profit researchers. The raw score is reliable for individual use in clinical settings, and interval scale transformation is available for parametric applications and the calculation of change scores.
为小儿麻痹后遗症（PPS）患者设计一份特定疾病的生活质量（QoL）问卷。
对45名PPS患者进行定性访谈，以确定主题并得出反映对生活质量影响的潜在条目。经过认知反馈后，将这些条目与比较问卷一起制成问卷包，并分发给319名患者。对回收的271份（85%）问卷进行探索性因素分析（EFA）和拉施分析。
一个包含25个条目的量表，即小儿麻痹后遗症生活质量量表（PP-QoL），显示出与拉施模型良好的拟合度（条件卡方p = 0.156）、单维度性（% t检验2.0：置信区间0.7 - 3.8）以及克朗巴哈系数为0.87。将潜在估计值转换为0 - 100分制后，平均得分是56.9（标准差18.5），只有3.3%的受访者处于量表的最低或最高分。重测信度显示组内相关系数（ICC）（2.1）为0.916，相关性为0.85。
特定疾病的PP-QoL表现出出色的信度、适当的同时效度，并符合拉施模型的标准。它能够考察健康状况对感知生活质量的影响以及康复干预的影响。该量表可供学术或非营利性用户免费使用，以改善对这种被忽视的致残性疾病的研究。对康复的意义 在小儿麻痹后遗症（PPS）中，现有工作考察了与健康相关的生活质量（HRQoL）的各个方面，如活动受限。特定疾病的生活质量测量方法将使研究人员能够模拟健康状况，如疲劳或行动受限，对PPS患者生活质量的影响。小儿麻痹后遗症生活质量量表（PP-QoL）基于患者的生活经历，符合拉施标准，可供学术和非营利性研究人员免费使用。原始分数在临床环境中供个人使用时是可靠的，区间量表转换可用于参数应用和变化分数的计算。
