Research Center, Sainte-Justine University Health Center, Montreal, QC, Canada.
Laboratoire EA 4430 - Clinique Psychanalyse Developpement (CliPsyD), Department of Psychology, University of Paris Nanterre, Nanterre, France.
Qual Life Res. 2021 Aug;30(8):2387-2404. doi: 10.1007/s11136-021-02815-3. Epub 2021 Mar 15.
Assessing health-related quality of life (HRQoL) is an increasingly important aspect of standard care in pediatric oncology. Currently, there is a gap in the availability of French questionnaires to assess the quality of life of French-speaking pediatric brain tumor (PBT) patients, which has important implications in the care of this population. The first aim of this study was to translate the original English Pediatric Quality of Life Inventory™ (PedsQL) brain tumor module version into French. The second aim was to describe the stability, repeatability and convergent validity of the French PedsQL brain tumor module.
A total of 61 PBT patients were included in this study. Among them, 15 children and 20 parents participated in the translation process. As part of the validation study, 48 children and 48 parents answered the PedsQL brain tumor module twice, and the PedsQL generic core scales and the patient-reported outcomes measurement information system (PROMIS-37 pediatric profile v2.0) questionnaire were administered once to the participants. The mean age of the 25 boys and 23 girls was 8.3 ± 4.8 years. For temporal stability, we used intraclass correlation coefficients (ICCs), for repeatability, we used the Bland and Altman method to assess the accuracy at a 1-week interval, and we used Pearson's correlation coefficients for convergent validity between the PedsQL brain tumor module, PedsQL general module and the PROMIS.
Temporal stability for the parent proxy-reports (average ICC = 0.98) and the child self-reports (average ICC = 0.98) were excellent. There was a high absolute stability over a 1-week interval for the parent proxy-reports (ICC > 0.96) and child self-reports (ICC > 0.96). Convergent validity between parent proxy-reports and child self-reports was supported by positive correlations for five subscales. Children reported higher scores in cognitive problems and the movement and balance parameters than their parents and reported lower scores on the worry parameter than their parents.
The strong psychometric properties of the French version of the PedsQL brain tumor module indicate that it is a validate and reliable questionnaire to measure HRQoL in PBT patients. The availability of a French version of the PedsQL brain tumor module supports the wider dissemination of the assessment of HRQOL in PBT patients.
评估健康相关生活质量(HRQoL)是儿科肿瘤学标准护理中日益重要的方面。目前,法语问卷评估法语区小儿脑肿瘤(PBT)患者生活质量的可用性存在差距,这对该人群的护理具有重要意义。本研究的第一个目的是将原始英文儿科生活质量量表™(PedsQL)脑肿瘤模块翻译成法语。第二个目的是描述法语 PedsQL 脑肿瘤模块的稳定性、可重复性和收敛效度。
共有 61 名 PBT 患者参与了这项研究。其中,15 名儿童和 20 名家长参与了翻译过程。在验证研究中,48 名儿童和 48 名家长两次回答了 PedsQL 脑肿瘤模块,同时向参与者发放了 PedsQL 通用核心量表和患者报告结果测量信息系统(PROMIS-37 儿科概况 v2.0)问卷。25 名男孩和 23 名女孩的平均年龄为 8.3±4.8 岁。为了评估时间稳定性,我们使用了组内相关系数(ICC),为了评估重复性,我们使用 Bland 和 Altman 方法评估了 1 周间隔内的准确性,我们使用 Pearson 相关系数评估了 PedsQL 脑肿瘤模块、PedsQL 通用模块和 PROMIS 之间的收敛效度。
父母代理报告的时间稳定性(平均 ICC=0.98)和儿童自我报告的时间稳定性(平均 ICC=0.98)非常好。父母代理报告和儿童自我报告在 1 周间隔内的绝对稳定性很高(ICC>0.96)。父母代理报告和儿童自我报告之间的收敛效度得到了五个子量表的正相关的支持。与父母相比,儿童在认知问题和运动平衡参数方面报告的分数更高,而在担忧参数方面报告的分数较低。
法语版 PedsQL 脑肿瘤模块具有良好的心理测量特性,表明它是一种有效的、可靠的问卷,可以衡量 PBT 患者的 HRQoL。法语版 PedsQL 脑肿瘤模块的可用性支持更广泛地传播 PBT 患者的 HRQOL 评估。