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

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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.

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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

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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.

Author information

Authors and Affiliations

  1. Department of Family Nursing, Graduate School of Health Sciences and Nursing, Faculty of Medicine, The University of Tokyo, 7-3-1 Hongo, Bunkyo-ku, Tokyo, 113-0033, Japan

    Iori Sato, Akiko Higuchi & Kiyoko Kamibeppu

  2. Children’s Cancer Association of Japan, 1-3-12 Asakusabashi, Taito-ku, Tokyo, 111-0053, Japan

    Akiko Higuchi

  3. Division of Pediatric Neuro-Oncology, Department of Neuro-Oncology/Neurosurgery, Comprehensive Cancer Center, International Medical Center, Saitama Medical University, 1397-1 Yamane, Hidaka-shi, Saitama, 350-1298, Japan

    Takaaki Yanagisawa

  4. Department of Neurosurgery, Faculty of Medicine, The University of Tokyo, 7-3-1 Hongo, Bunkyo-ku, Tokyo, 113-0033, Japan

    Akitake Mukasa & Nobuhito Saito

  5. Department of Pediatrics, Faculty of Medicine, The University of Tokyo, 7-3-1 Hongo, Bunkyo-ku, Tokyo, 113-0033, Japan

    Kohmei Ida

  6. Sawamura Neurosurgery Clinic, North-7, West-5, Kita-ku, Sapporo, 060-0807, Japan

    Yutaka Sawamura

  7. Department of Neurosurgery, Graduate School of Biomedical Sciences, Hiroshima University, 1-2-3 Kasumi, Minami-ku, Hiroshima, 734-8551, Japan

    Kazuhiko Sugiyama

  8. Departments of Neurosurgery, Tohoku University Graduate School of Medicine, 1-1 Seiryo-machi, Aoba-ku, Sendai, 980-8574, Japan

    Toshihiro Kumabe

  9. Department of Neurosurgery, Kurume University School of Medicine, Asahimachi 67, Kurume-shi, Fukuoka, 830-0011, Japan

    Mizuhiko Terasaki

  10. Department of Neuro-Oncology/Neurosurgery, Comprehensive Cancer Center, International Medical Center, Saitama Medical University, 1397-1 Yamane, Hidaka-shi, Saitama, 350-1298, Japan

    Ryo Nishikawa

  11. Department of Pediatrics, St. Luke’s International Hospital, 9-1 Akashi-cho, Chuo-ku, Tokyo, 104-8560, Japan

    Yasushi Ishida

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  1. Iori Sato
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  2. Akiko Higuchi
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  3. Takaaki Yanagisawa
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  4. Akitake Mukasa
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  12. Yasushi Ishida
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  13. Kiyoko Kamibeppu
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Corresponding author

Correspondence to Kiyoko Kamibeppu.

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Sato, I., Higuchi, A., Yanagisawa, T. et al. Factors influencing self- and parent-reporting health-related quality of life in children with brain tumors. Qual Life Res 22, 185–201 (2013). https://doi.org/10.1007/s11136-012-0137-3

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