Sick Kids Transplant Center, The Hospital for Sick Children and The University of Toronto, Toronto, Ontario, Canada.
Social Work, University of Calgary, Calgary, Alberta, Canada.
J Pediatr. 2014 Sep;165(3):547-55.e7. doi: 10.1016/j.jpeds.2014.05.024. Epub 2014 Jun 26.
To develop and validate a Pediatric Liver Transplantation Quality of Life (PeLTQL) questionnaire via an international multicenter collaboration.
Item generation with 146 child and/or parent interviews (92 pediatric liver transplantation [LT] recipients) and 3 focus groups generated over 300 items. An item reduction questionnaire with 76 questions was completed by 320 participants (212 pediatric LT recipients).
Frequency-importance product ranking, questionnaire formatting, and pre-testing resulted in a 26-item PeLTQL questionnaire. Factor analysis identified 3 domains: future health, coping and adjustment, and social-emotional. The validation phase was completed by 133 (46% male) LT recipients (aged 8-18 years). Internal consistency (Cronbach α = 0.86) and test-retest reliability (intraclass correlation coefficient = 0.85) were excellent. Mean patient PeLTQL score was 69.54 ± 13.06. Construct validity with validated tools identified significant correlations between mean PeLTQL scores and (1) Pediatric Quality of Life Inventory generic (r = 0.64, P < .001); (2) Pediatric Quality of Life Inventory transplant (r = 0.73, P < .001); and (3) Screen for Child Anxiety Related Disorders (r = -0.57, P < .001) scores. Only 17/3458 (0.5%) questions were left blank. A Flesch-Kincaid grade level of 5.4 was calculated as a measure of the PeLTQL readability statistic.
The PeLTQL is a valid and reliable novel 26-item disease-specific health related quality of life instrument for LT recipients aged 8-18 years. Low PeLTQL scores can identify patients at risk for childhood anxiety and depression. The tool is now ready for broad use in both clinical practice and clinical interventional trials.
通过国际多中心合作，开发和验证小儿肝移植生活质量（PeLTQL）问卷。
对 146 名儿童和/或家长（92 名小儿肝移植[LT]受者）进行访谈和 3 次焦点小组访谈，生成了 300 多项条目。320 名参与者（212 名小儿 LT 受者）完成了一份包含 76 个问题的条目简化问卷。
频数重要性乘积排序、问卷格式和预测试产生了一个 26 项的 PeLTQL 问卷。因子分析确定了 3 个领域：未来健康、应对和调整以及社会情感。133 名（46%为男性）LT 受者（年龄 8-18 岁）完成了验证阶段。内部一致性（Cronbach α=0.86）和重测信度（组内相关系数=0.85）均良好。患者平均 PeLTQL 评分为 69.54±13.06。与验证工具的结构效度相关，PeLTQL 评分与（1）儿童生活质量普适性量表（r=0.64，P<0.001）；（2）儿童生活质量量表-移植版（r=0.73，P<0.001）；和（3）儿童焦虑相关障碍筛查量表（r=-0.57，P<0.001）呈显著相关。仅 17/3458（0.5%）个问题被留空。Flesch-Kincaid 阅读水平等级为 5.4，用作 PeLTQL 可读性统计的衡量标准。
PeLTQL 是一种有效且可靠的新的 26 项针对 8-18 岁 LT 受者的疾病特异性健康相关生活质量工具。低 PeLTQL 评分可识别有儿童焦虑和抑郁风险的患者。该工具现在可广泛用于临床实践和临床干预试验。
