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Quality of Life Research

, Volume 22, Issue 1, pp 185–201 | Cite as

Factors influencing self- and parent-reporting health-related quality of life in children with brain tumors

  • Iori Sato
  • Akiko Higuchi
  • Takaaki Yanagisawa
  • Akitake Mukasa
  • Kohmei Ida
  • Yutaka Sawamura
  • Kazuhiko Sugiyama
  • Nobuhito Saito
  • Toshihiro Kumabe
  • Mizuhiko Terasaki
  • Ryo Nishikawa
  • Yasushi Ishida
  • Kiyoko KamibeppuEmail author
Article

Abstract

Purpose

Health-related quality of life (HRQOL) is not only a degree of health but also reflects patient perceptions and expectations of health. For children with brain tumors, better understanding of HRQOL requires the use of complementary reports from parents and interviewer-administered reports for children. Here, we aimed to test whether or not the trait anxiety of children and the psychological distress of their parents influence children’s and parents’ responses to HRQOL questionnaires, and whether or not the report-administration method for children influences children’s responses to HRQOL questionnaires.

Methods

One hundred and thirty-four children aged 5–18 with brain tumors and one of their parents completed the Pediatric Quality of Life Inventory (PedsQL) Brain Tumor Module questionnaires. In addition, the children also completed the State-Trait Anxiety Inventory for Children (STAIC), and the parents also completed the Kessler-10 (K10) and health and sociodemographic characteristics questionnaires. The child questionnaires were administered either by the child (self-administered) or an interviewer. Rater-dependent perceptions about HRQOL were derived from the subscales scores of the PedsQL Brain Tumor Module using structural equation modeling based on a multitrait-multimethod model. The STAIC trait-anxiety score, K10 score, report-administration method, and other health and sociodemographic factors related to each child’s or parent’s perceptions were identified through multiple linear regression analyses of the questionnaire responses. We used a path analysis to estimate the change in a PedsQL child-reported score that occurs when interviewer-administration changes the child’s perception about HRQOL.

Results

Surveys for 89 children were self-administered while those for 45 were interviewer-administered. The perceptions of the children and parents were calculated by fitting data to the model (chi-squared P = 0.087, normed fit index = 0.932, comparative fit index = 0.978, standardized root mean squared residual = 0.053, and root mean square error of approximation = 0.054). The children’s perception of HRQOL was affected by their STAIC trait-anxiety score (b = −0.43, 95% CI [−0.60, −0.25]). The parent’s perception was affected by their child’s treatment status (b = 0.26, 95% CI [0.09, 0.43]), the parent’s K10 score (b = −0.21, 95% CI [−0.37, −0.04]), and by education level (b = 0.17, 95% CI [0.00, 0.34]). The change in the child-reported PedsQL score in relation to the method of administration ranged from −1.1 (95% CI: −3.5, 1.3) on the procedural anxiety subscale to −2.5 (95% CI: −7.6, 2.6) on the movement and balance subscale.

Conclusion

Child-reporting of HRQOL is little influenced by the method of administration. Children’s perception about HRQOL tended to be influenced by their trait anxiety, while parents’ perception was influenced by their psychological distress, academic background, and their child’s treatment status.

Keywords

Brain neoplasms Child Observer variation Parents Quality of life Questionnaires 

Abbreviations

AMOS

Analysis of moment structures

CCAJ

The Children’s Cancer Association of Japan

CFI

Comparative fit index

CHQ

Child Health Questionnaire

CI

Confidence interval

HRQOL

Health-related quality of life

K10

Kessler-10

MID

Minimum clinically significant difference

MTMM

Multitrait-multimethod

NFI

Normed fit index

PedsQL

Pediatric Quality of Life Inventory

RMSEA

Root mean square error of approximation

SD

Standard deviation

SEM

Structural equation modeling

SPSS

Statistical package for social sciences

SRMR

Standardized root mean squared residual

STAIC

State-Trait Anxiety Inventory for Children

TACQOL

TNO/AZL Child Quality of Life

Notes

Acknowledgments

This work was supported by a Grant-in-Aid for Pediatric Cancer Treatment and Research from the CCAJ 2008 and a Grant-in-Aid for Cancer Research from the Ministry of Health, Labour and Welfare of Japan (No. 18-14) 2008.

Supplementary material

11136_2012_137_MOESM1_ESM.xlsx (34 kb)
Supplementary material 1 (XLSX 34 kb)

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Copyright information

© Springer Science+Business Media B.V. 2012

Authors and Affiliations

  • Iori Sato
    • 1
  • Akiko Higuchi
    • 1
    • 2
  • Takaaki Yanagisawa
    • 3
  • Akitake Mukasa
    • 4
  • Kohmei Ida
    • 5
  • Yutaka Sawamura
    • 6
  • Kazuhiko Sugiyama
    • 7
  • Nobuhito Saito
    • 4
  • Toshihiro Kumabe
    • 8
  • Mizuhiko Terasaki
    • 9
  • Ryo Nishikawa
    • 10
  • Yasushi Ishida
    • 11
  • Kiyoko Kamibeppu
    • 1
    Email author
  1. 1.Department of Family Nursing, Graduate School of Health Sciences and Nursing, Faculty of MedicineThe University of TokyoBunkyo-ku, TokyoJapan
  2. 2.Children’s Cancer Association of JapanTaito-ku, TokyoJapan
  3. 3.Division of Pediatric Neuro-Oncology, Department of Neuro-Oncology/Neurosurgery, Comprehensive Cancer Center, International Medical CenterSaitama Medical UniversityHidaka-shi, SaitamaJapan
  4. 4.Department of Neurosurgery, Faculty of MedicineThe University of TokyoBunkyo-ku, TokyoJapan
  5. 5.Department of Pediatrics, Faculty of MedicineThe University of TokyoBunkyo-ku, TokyoJapan
  6. 6.Sawamura Neurosurgery ClinicKita-ku, SapporoJapan
  7. 7.Department of Neurosurgery, Graduate School of Biomedical SciencesHiroshima UniversityMinami-ku, HiroshimaJapan
  8. 8.Departments of NeurosurgeryTohoku University Graduate School of MedicineAoba-ku, SendaiJapan
  9. 9.Department of NeurosurgeryKurume University School of MedicineKurume-shi, FukuokaJapan
  10. 10.Department of Neuro-Oncology/Neurosurgery, Comprehensive Cancer Center, International Medical CenterSaitama Medical UniversityHidaka-shi, SaitamaJapan
  11. 11.Department of PediatricsSt. Luke’s International HospitalChuo-ku, TokyoJapan

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