Maxime Caru1,2,3, Sébastien Perreault4,5, Ariane Levesque4,6, Serge Sultan4,6, Leandra Desjardins4, Émélie Rondeau4, Lucia Romo7,8, Daniel Curnier4,9, Laurence Kern7,10. 1. Research Center, Sainte-Justine University Health Center, Montreal, QC, Canada. maxime.caru@umontreal.ca. 2. Laboratoire EA 4430 - Clinique Psychanalyse Developpement (CliPsyD), Department of Psychology, University of Paris Nanterre, Nanterre, France. maxime.caru@umontreal.ca. 3. Laboratory of Pathophysiology of EXercise (LPEX), School of Kinesiology and Physical Activity Sciences, Faculty of Medicine, University of Montreal, Montreal, Canada. maxime.caru@umontreal.ca. 4. Research Center, Sainte-Justine University Health Center, Montreal, QC, Canada. 5. Department of Neuroscience, Faculty of Medicine, University of Montreal, Montreal, Canada. 6. Department of Psychology, University of Montreal, Montreal, QC, Canada. 7. Laboratoire EA 4430 - Clinique Psychanalyse Developpement (CliPsyD), Department of Psychology, University of Paris Nanterre, Nanterre, France. 8. Mental and Brain Diseases Clinic (CMME), INSERM U 1266, University Hospital Group Paris Psychiatry & Neuroscience, Paris, France. 9. Laboratory of Pathophysiology of EXercise (LPEX), School of Kinesiology and Physical Activity Sciences, Faculty of Medicine, University of Montreal, Montreal, Canada. 10. Laboratoire EA 29 31, Laboratoire Interdisciplinaire en Neurosciences, Physiologie et Psychologie: Apprentissages, Activité Physique et Santé (LINP2‑2APS), University of Paris Nanterre, Nanterre, Ile‑de‑France, France.
Abstract
INTRODUCTION: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.
INTRODUCTION: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.