Skip to main content
Top
Gepubliceerd in:

15-03-2021

Validity and reliability of the French version of the Pediatric Quality of Life Inventory™ brain tumor module

Auteurs: Maxime Caru, Sébastien Perreault, Ariane Levesque, Serge Sultan, Leandra Desjardins, Émélie Rondeau, Lucia Romo, Daniel Curnier, Laurence Kern

Gepubliceerd in: Quality of Life Research | Uitgave 8/2021

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail

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.
Bijlagen
Alleen toegankelijk voor geautoriseerde gebruikers
Literatuur
1.
go back to reference Kaderali, Z., Lamberti-Pasculli, M., & Rutka, J. T. (2009). The changing epidemiology of paediatric brain tumours: A review from the Hospital for Sick Children. Child’s Nervous System: ChNS: Official Journal of the International Society for Pediatric Neurosurgery, 25(7), 787–793.CrossRef Kaderali, Z., Lamberti-Pasculli, M., & Rutka, J. T. (2009). The changing epidemiology of paediatric brain tumours: A review from the Hospital for Sick Children. Child’s Nervous System: ChNS: Official Journal of the International Society for Pediatric Neurosurgery, 25(7), 787–793.CrossRef
2.
go back to reference Canadian Cancer Society. (2016). Canadian cancer statistics 2016—special topic: HPV-associated cancers. Toronto: Canadian Cancer Society, Statistic Canada. Canadian Cancer Society. (2016). Canadian cancer statistics 2016—special topic: HPV-associated cancers. Toronto: Canadian Cancer Society, Statistic Canada.
3.
go back to reference Institute of Medicine, National Research Council, & National Cancer Policy Board. (2003). The epidemiology of childhood cancer. In M. Hewitt, S. L. Weiner, & J. V. Simone (Eds.), Childhood cancer survivorship: Improving care and quality of life (p. 35). Washington DC: National Academies Press (US). Institute of Medicine, National Research Council, & National Cancer Policy Board. (2003). The epidemiology of childhood cancer. In M. Hewitt, S. L. Weiner, & J. V. Simone (Eds.), Childhood cancer survivorship: Improving care and quality of life (p. 35). Washington DC: National Academies Press (US).
4.
go back to reference Bitterlich, C., & Vordermark, D. (2017). Analysis of health-related quality of life in patients with brain tumors prior and subsequent to radiotherapy. Oncology Letters, 14(2), 1841–1846.PubMedPubMedCentralCrossRef Bitterlich, C., & Vordermark, D. (2017). Analysis of health-related quality of life in patients with brain tumors prior and subsequent to radiotherapy. Oncology Letters, 14(2), 1841–1846.PubMedPubMedCentralCrossRef
5.
go back to reference Macartney, G., Harrison, M. B., VanDenKerkhof, E., Stacey, D., & McCarthy, P. (2014). Quality of life and symptoms in pediatric brain tumor survivors: A systematic review. Journal of Pediatric Oncology Nursing: Official Journal of the Association of Pediatric Oncology Nurses, 31(2), 65–77.CrossRef Macartney, G., Harrison, M. B., VanDenKerkhof, E., Stacey, D., & McCarthy, P. (2014). Quality of life and symptoms in pediatric brain tumor survivors: A systematic review. Journal of Pediatric Oncology Nursing: Official Journal of the Association of Pediatric Oncology Nurses, 31(2), 65–77.CrossRef
6.
go back to reference Singh, O., Meena, R., Srivastava, V., Pandey, V., Shah, A., & Meena, R. (2016). Impact of brain tumour treatment on quality of life in children: A health perspective. Journal of Neuro-Oncology and Neuroscience, 1(1), 1–6. Singh, O., Meena, R., Srivastava, V., Pandey, V., Shah, A., & Meena, R. (2016). Impact of brain tumour treatment on quality of life in children: A health perspective. Journal of Neuro-Oncology and Neuroscience, 1(1), 1–6.
7.
go back to reference Palmer, S. N., Meeske, K. A., Katz, E. R., Burwinkle, T. M., & Varni, J. W. (2007). ThePedsQL brain tumor module: Initial reliability and validity. Pediatric Blood & Cancer, 49(3), 287–293.CrossRef Palmer, S. N., Meeske, K. A., Katz, E. R., Burwinkle, T. M., & Varni, J. W. (2007). ThePedsQL brain tumor module: Initial reliability and validity. Pediatric Blood & Cancer, 49(3), 287–293.CrossRef
8.
go back to reference Schulte, F., Russell, K. B., Cullen, P., Embry, L., Fay-McClymont, T., Johnston, D., et al. (2017). Systematic review and meta-analysis of health-related quality of life in pediatric CNS tumor survivors. Pediatric Blood & Cancer, 64(8), e26442.CrossRef Schulte, F., Russell, K. B., Cullen, P., Embry, L., Fay-McClymont, T., Johnston, D., et al. (2017). Systematic review and meta-analysis of health-related quality of life in pediatric CNS tumor survivors. Pediatric Blood & Cancer, 64(8), e26442.CrossRef
9.
go back to reference World Health Organization. (1948). Constitution of the World Health Organization: Basic document. Geneva: World Health Organization. World Health Organization. (1948). Constitution of the World Health Organization: Basic document. Geneva: World Health Organization.
10.
go back to reference Karimi, M., & Brazier, J. (2016). Health, health-related quality of life, and quality of life: What is the difference? PharmacoEconomics, 34(7), 645–649.PubMedCrossRef Karimi, M., & Brazier, J. (2016). Health, health-related quality of life, and quality of life: What is the difference? PharmacoEconomics, 34(7), 645–649.PubMedCrossRef
11.
go back to reference Ebrahim, S. (1995). Clinical and public health perspectives and applications of health-related quality of life measurement. Social Science and Medicine, 41(10), 1383–1394.PubMedCrossRef Ebrahim, S. (1995). Clinical and public health perspectives and applications of health-related quality of life measurement. Social Science and Medicine, 41(10), 1383–1394.PubMedCrossRef
12.
go back to reference Sato, I., Higuchi, A., Yanagisawa, T., Mukasa, A., Ida, K., Sawamura, Y., et al. (2014). Cancer-specific health-related quality of life in children with brain tumors. Quality of life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 23(4), 1059–1068.CrossRef Sato, I., Higuchi, A., Yanagisawa, T., Mukasa, A., Ida, K., Sawamura, Y., et al. (2014). Cancer-specific health-related quality of life in children with brain tumors. Quality of life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 23(4), 1059–1068.CrossRef
13.
go back to reference Trudel, J., Leduc, N., & Dumont, S. (2012). Evolution of the concept of quality of life in oncology and its measurement through time. Psycho-Oncologie., 6(4), 201–208.CrossRef Trudel, J., Leduc, N., & Dumont, S. (2012). Evolution of the concept of quality of life in oncology and its measurement through time. Psycho-Oncologie., 6(4), 201–208.CrossRef
14.
go back to reference Varni, J. W., Seid, M., & Rode, C. A. (1999). The PedsQL: Measurement model for the pediatric quality of life inventory. Medical Care, 37(2), 126–139.PubMedCrossRef Varni, J. W., Seid, M., & Rode, C. A. (1999). The PedsQL: Measurement model for the pediatric quality of life inventory. Medical Care, 37(2), 126–139.PubMedCrossRef
15.
go back to reference Varni, J. W., Burwinkle, T. M., Katz, E. R., Meeske, K., & Dickinson, P. (2002). ThePedsQL in pediatric cancer: reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module. Cancer, 94(7), 2090–2106.PubMedCrossRef Varni, J. W., Burwinkle, T. M., Katz, E. R., Meeske, K., & Dickinson, P. (2002). ThePedsQL in pediatric cancer: reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module. Cancer, 94(7), 2090–2106.PubMedCrossRef
16.
go back to reference Musiol, K., Bulska, W., Brożek, P., Oślizło, B., Ryzak, S., Dubiel, J., et al. (2019). Quality of life in survivors of childhood brain tumour and the association of children’s diseases on quality of their parents life. Psycho-Oncology, 28(5), 1088–1095.PubMed Musiol, K., Bulska, W., Brożek, P., Oślizło, B., Ryzak, S., Dubiel, J., et al. (2019). Quality of life in survivors of childhood brain tumour and the association of children’s diseases on quality of their parents life. Psycho-Oncology, 28(5), 1088–1095.PubMed
17.
go back to reference Kulkarni, A. V., Piscione, J., Shams, I., & Bouffet, E. (2013). Long-term quality of life in children treated for posterior fossa brain tumors. Journal of Neurosurgery: Pediatrics, 12(3), 235–240.PubMed Kulkarni, A. V., Piscione, J., Shams, I., & Bouffet, E. (2013). Long-term quality of life in children treated for posterior fossa brain tumors. Journal of Neurosurgery: Pediatrics, 12(3), 235–240.PubMed
18.
go back to reference Anthony, S. J., Selkirk, E., Sung, L., Klaassen, R. J., Dix, D., Scheinemann, K., et al. (2014). Considering quality of life for children with cancer: A systematic review of patient-reported outcome measures and the development of a conceptual model. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 23(3), 771–789.CrossRef Anthony, S. J., Selkirk, E., Sung, L., Klaassen, R. J., Dix, D., Scheinemann, K., et al. (2014). Considering quality of life for children with cancer: A systematic review of patient-reported outcome measures and the development of a conceptual model. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 23(3), 771–789.CrossRef
19.
go back to reference Mapi Research Institute. (2002). Linguistic validation of the PedsQLTM—a quality of life questionnaire. Lyon: Mapi Research Institute. Mapi Research Institute. (2002). Linguistic validation of the PedsQLTM—a quality of life questionnaire. Lyon: Mapi Research Institute.
20.
go back to reference Tessier, S., Vuillemin, A., Lemelle, J.-L., & Briançon, S. (2009). Psychometric properties of the French pediatric quality of life inventory version 4.0 (PedsQL (TM) 4.0) generic core scales. European Review of Applied Psychology-Revue Europeenne De PsychologieAppliquee, 59(4), 291–300.CrossRef Tessier, S., Vuillemin, A., Lemelle, J.-L., & Briançon, S. (2009). Psychometric properties of the French pediatric quality of life inventory version 4.0 (PedsQL (TM) 4.0) generic core scales. European Review of Applied Psychology-Revue Europeenne De PsychologieAppliquee, 59(4), 291–300.CrossRef
21.
go back to reference Hinds, P. S., Nuss, S. L., Ruccione, K. S., Withycombe, J. S., Jacobs, S., DeLuca, H., et al. (2013). PROMIS pediatric measures in pediatric oncology: Valid and clinically feasible indicators of patient-reported outcomes. Pediatric Blood & Cancer, 60(3), 402–408.CrossRef Hinds, P. S., Nuss, S. L., Ruccione, K. S., Withycombe, J. S., Jacobs, S., DeLuca, H., et al. (2013). PROMIS pediatric measures in pediatric oncology: Valid and clinically feasible indicators of patient-reported outcomes. Pediatric Blood & Cancer, 60(3), 402–408.CrossRef
23.
go back to reference Varni, J. W., Magnus, B., Stucky, B. D., Liu, Y., Quinn, H., Thissen, D., et al. (2014). Psychometric properties of the PROMIS ® pediatric scales: Precision, stability, and comparison of different scoring and administration options. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 23(4), 1233–1243.CrossRef Varni, J. W., Magnus, B., Stucky, B. D., Liu, Y., Quinn, H., Thissen, D., et al. (2014). Psychometric properties of the PROMIS ® pediatric scales: Precision, stability, and comparison of different scoring and administration options. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 23(4), 1233–1243.CrossRef
24.
go back to reference Lai, J. S., Kupst, M. J., Beaumont, J. L., Manley, P. E., Chang, J. H., Hartsell, W. F., et al. (2019). Using the Patient-Reported Outcomes Measurement Information System (PROMIS) to measure symptom burden reported by patients with brain tumors. Pediatric Blood & Cancer, 66(3), e27526.CrossRef Lai, J. S., Kupst, M. J., Beaumont, J. L., Manley, P. E., Chang, J. H., Hartsell, W. F., et al. (2019). Using the Patient-Reported Outcomes Measurement Information System (PROMIS) to measure symptom burden reported by patients with brain tumors. Pediatric Blood & Cancer, 66(3), e27526.CrossRef
25.
go back to reference Cicchetti, D. V. (1994). Guidelines, criteria, and rules of thumb for evaluating normed and standardized assessment instruments in psychology. Psychological Assessment, 6(4), 284.CrossRef Cicchetti, D. V. (1994). Guidelines, criteria, and rules of thumb for evaluating normed and standardized assessment instruments in psychology. Psychological Assessment, 6(4), 284.CrossRef
26.
go back to reference Bland, J. M., & Altman, D. G. (1986). Statistical methods for assessing agreement between two methods of clinical measurement. Lancet, 1(8476), 307–310.PubMedCrossRef Bland, J. M., & Altman, D. G. (1986). Statistical methods for assessing agreement between two methods of clinical measurement. Lancet, 1(8476), 307–310.PubMedCrossRef
27.
go back to reference Cohen, J. (1998). Statistical power analysis for the behavioural sciences (xxi). Hillsdale, NJ: L Erlbaum associates. Cohen, J. (1998). Statistical power analysis for the behavioural sciences (xxi). Hillsdale, NJ: L Erlbaum associates.
28.
go back to reference Johnson, K. J., Cullen, J., Barnholtz-Sloan, J. S., Ostrom, Q. T., Langer, C. E., Turner, M. C., et al. (2014). Childhood brain tumor epidemiology: A brain tumor epidemiology consortium review. Cancer Epidemiology, Biomarkers & Prevention: A Publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology, 23(12), 2716–2736.CrossRef Johnson, K. J., Cullen, J., Barnholtz-Sloan, J. S., Ostrom, Q. T., Langer, C. E., Turner, M. C., et al. (2014). Childhood brain tumor epidemiology: A brain tumor epidemiology consortium review. Cancer Epidemiology, Biomarkers & Prevention: A Publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology, 23(12), 2716–2736.CrossRef
29.
go back to reference Canadian Cancer Statistics Advisory Committee. (2019). Canadian cancer statistics 2019. Toronto, ON: Canadian Cancer Society. Canadian Cancer Statistics Advisory Committee. (2019). Canadian cancer statistics 2019. Toronto, ON: Canadian Cancer Society.
31.
go back to reference Meeske, K., Katz, E. R., Palmer, S. N., Burwinkle, T., & Varni, J. W. (2004). Parent proxy-reported health-related quality of life and fatigue in pediatric patients diagnosed with brain tumors and acute lymphoblastic leukemia. Cancer, 101(9), 2116–2125.PubMedCrossRef Meeske, K., Katz, E. R., Palmer, S. N., Burwinkle, T., & Varni, J. W. (2004). Parent proxy-reported health-related quality of life and fatigue in pediatric patients diagnosed with brain tumors and acute lymphoblastic leukemia. Cancer, 101(9), 2116–2125.PubMedCrossRef
32.
go back to reference Varni, J. W., & Setoguchi, Y. (1992). Screening for behavioral and emotional problems in children and adolescents with congenital or acquired limb deficiencies. American Journal of Diseases of Children, 146(1), 103–107.PubMed Varni, J. W., & Setoguchi, Y. (1992). Screening for behavioral and emotional problems in children and adolescents with congenital or acquired limb deficiencies. American Journal of Diseases of Children, 146(1), 103–107.PubMed
33.
go back to reference Stuber, M. L., Kazak, A. E., Meeske, K., Barakat, L., Guthrie, D., Garnier, H., et al. (1997). Predictors of posttraumatic stress symptoms in childhood cancer survivors. Pediatrics, 100(6), 958–964.PubMedCrossRef Stuber, M. L., Kazak, A. E., Meeske, K., Barakat, L., Guthrie, D., Garnier, H., et al. (1997). Predictors of posttraumatic stress symptoms in childhood cancer survivors. Pediatrics, 100(6), 958–964.PubMedCrossRef
34.
go back to reference Sato, I., Higuchi, A., Yanagisawa, T., Mukasa, A., Ida, K., Sawamura, Y., et al. (2014). Cancer-specific health-related quality of life in children with brain tumors. Quality of Life Research, 23(4), 1059–1068.PubMedCrossRef Sato, I., Higuchi, A., Yanagisawa, T., Mukasa, A., Ida, K., Sawamura, Y., et al. (2014). Cancer-specific health-related quality of life in children with brain tumors. Quality of Life Research, 23(4), 1059–1068.PubMedCrossRef
35.
go back to reference Johnston, C. A., Steele, R. G., Herrera, E. A., & Phipps, S. (2003). Parent and child reporting of negative life events: Discrepancy and agreement across pediatric samples. Journal of Pediatric Psychology, 28(8), 579–588.PubMedCrossRef Johnston, C. A., Steele, R. G., Herrera, E. A., & Phipps, S. (2003). Parent and child reporting of negative life events: Discrepancy and agreement across pediatric samples. Journal of Pediatric Psychology, 28(8), 579–588.PubMedCrossRef
36.
go back to reference Leclair, T., Carret, A.-S., Samson, Y., & Sultan, S. (2016). Stability and repeatability of the distress thermometer (DT) and the Edmonton Symptom Assessment System-Revised (ESAS-r) with parents of childhood cancer survivors. PLoS ONE, 11(7), e0159773.PubMedPubMedCentralCrossRef Leclair, T., Carret, A.-S., Samson, Y., & Sultan, S. (2016). Stability and repeatability of the distress thermometer (DT) and the Edmonton Symptom Assessment System-Revised (ESAS-r) with parents of childhood cancer survivors. PLoS ONE, 11(7), e0159773.PubMedPubMedCentralCrossRef
37.
go back to reference Carpentieri, S. C., Meyer, E. A., Delaney, B. L., Victoria, M. L., Gannon, B. K., Doyle, J. M., et al. (2003). Psychosocial and behavioral functioning among pediatric brain tumor survivors. Journal of Neuro-Oncology, 63(3), 279–287.PubMedCrossRef Carpentieri, S. C., Meyer, E. A., Delaney, B. L., Victoria, M. L., Gannon, B. K., Doyle, J. M., et al. (2003). Psychosocial and behavioral functioning among pediatric brain tumor survivors. Journal of Neuro-Oncology, 63(3), 279–287.PubMedCrossRef
38.
go back to reference Eiser, C., Eiser, J. R., & Stride, C. B. (2005). Quality of life in children newly diagnosed with cancer and their mothers. Health and Quality of Life Outcomes, 3, 29.PubMedPubMedCentralCrossRef Eiser, C., Eiser, J. R., & Stride, C. B. (2005). Quality of life in children newly diagnosed with cancer and their mothers. Health and Quality of Life Outcomes, 3, 29.PubMedPubMedCentralCrossRef
39.
go back to reference Dahlquist, L. M., Czyzewski, D. I., Copeland, K. G., Jones, C. L., Taub, E., & Vaughan, J. K. (1993). Parents of children newly diagnosed with cancer: Anxiety, coping, and marital distress. Journal of Pediatric Psychology, 18(3), 365–376.PubMedCrossRef Dahlquist, L. M., Czyzewski, D. I., Copeland, K. G., Jones, C. L., Taub, E., & Vaughan, J. K. (1993). Parents of children newly diagnosed with cancer: Anxiety, coping, and marital distress. Journal of Pediatric Psychology, 18(3), 365–376.PubMedCrossRef
40.
go back to reference Sato, I., Higuchi, A., Yanagisawa, T., Mukasa, A., Ida, K., Sawamura, Y., et al. (2010). Development of the Japanese version of the pediatric quality of life inventory brain tumor module. Health and Quality of Life Outcomes, 8, 38.PubMedPubMedCentralCrossRef Sato, I., Higuchi, A., Yanagisawa, T., Mukasa, A., Ida, K., Sawamura, Y., et al. (2010). Development of the Japanese version of the pediatric quality of life inventory brain tumor module. Health and Quality of Life Outcomes, 8, 38.PubMedPubMedCentralCrossRef
41.
go back to reference Srivastava, V., Pandey, V., & Meena, R. (2016). Impact of brain tumour treatment on quality of life in children: A health perspective. Neurooncology Open Access, 1, 1. Srivastava, V., Pandey, V., & Meena, R. (2016). Impact of brain tumour treatment on quality of life in children: A health perspective. Neurooncology Open Access, 1, 1.
42.
go back to reference Sung, L., Klaassen, R. J., Dix, D., Pritchard, S., Yanofsky, R., Dzolganovski, B., et al. (2009). Identification of paediatric cancer patients with poor quality of life. British Journal of Cancer., 100(1), 82–88.PubMedCrossRef Sung, L., Klaassen, R. J., Dix, D., Pritchard, S., Yanofsky, R., Dzolganovski, B., et al. (2009). Identification of paediatric cancer patients with poor quality of life. British Journal of Cancer., 100(1), 82–88.PubMedCrossRef
Metagegevens
Titel
Validity and reliability of the French version of the Pediatric Quality of Life Inventory™ brain tumor module
Auteurs
Maxime Caru
Sébastien Perreault
Ariane Levesque
Serge Sultan
Leandra Desjardins
Émélie Rondeau
Lucia Romo
Daniel Curnier
Laurence Kern
Publicatiedatum
15-03-2021
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 8/2021
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-021-02815-3