Bullinger Monika, Quitmann Julia, Silva Neuza, Rohenkohl Anja, Chaplin John E, DeBusk Kendra, Mimoun Emmanuelle, Feigerlova Eva, Herdman Michael, Sanz Dolores, Wollmann Hartmut, Pleil Andreas, Power Michael
Department of Medical Psychology, University Hamburg-Eppendorf, Hamburg, Germany.
Horm Res Paediatr. 2014;82(1):18-30. doi: 10.1159/000358832. Epub 2014 Jun 11.
Testing cross-cultural equivalence of patient-reported outcomes requires sufficiently large samples per country, which is difficult to achieve in rare endocrine paediatric conditions. We describe a novel approach to cross-cultural testing of the Quality of Life in Short Stature Youth (QoLISSY) questionnaire in five countries by sequentially taking one country out (TOCO) from the total sample and iteratively comparing the resulting psychometric performance.
Development of the QoLISSY proceeded from focus group discussions through pilot testing to field testing in 268 short-statured patients and their parents. To explore cross-cultural equivalence, the iterative TOCO technique was used to examine and compare the validity, reliability, and convergence of patient and parent responses on QoLISSY in the field test dataset, and to predict QoLISSY scores from clinical, socio-demographic and psychosocial variables.
Validity and reliability indicators were satisfactory for each sample after iteratively omitting one country. Comparisons with the total sample revealed cross-cultural equivalence in internal consistency and construct validity for patients and parents, high inter-rater agreement and a substantial proportion of QoLISSY variance explained by predictors.
The TOCO technique is a powerful method to overcome problems of country-specific testing of patient-reported outcome instruments. It provides an empirical support to QoLISSY's cross-cultural equivalence and is recommended for future research.
对患者报告结局进行跨文化等效性测试需要每个国家有足够大的样本量，这在罕见的儿科内分泌疾病中很难实现。我们描述了一种新颖的方法，通过从总样本中依次剔除一个国家（TOCO）并迭代比较所得的心理测量性能，对五个国家的矮小青年生活质量问卷（QoLISSY）进行跨文化测试。
QoLISSY的开发过程从焦点小组讨论开始，经过预试验，再到对268名矮小患者及其父母进行现场测试。为了探索跨文化等效性，使用迭代TOCO技术来检查和比较现场测试数据集中患者和父母对QoLISSY的反应的有效性、可靠性和收敛性，并根据临床、社会人口统计学和心理社会变量预测QoLISSY得分。
在迭代剔除一个国家后，每个样本的有效性和可靠性指标都令人满意。与总样本的比较显示，患者和父母在内部一致性和结构效度方面具有跨文化等效性，评分者间一致性高，预测因素解释了QoLISSY的很大一部分方差。
TOCO技术是一种强大的方法，可以克服患者报告结局工具进行特定国家测试时遇到的问题。它为QoLISSY的跨文化等效性提供了实证支持，并推荐用于未来的研究。
