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Quality of life among parents of children with cancer or brain tumors: the impact of child characteristics and parental psychosocial factors

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Abstract

Purpose

Understanding the impact of childhood cancer on the family is increasingly important. This study aimed to (1) examine the relationship between child clinical characteristics and health-related quality of life (QOL) among parents of children with cancer or brain tumors, and (2) determine how parental psychosocial factors impact this relationship.

Methods

Using a within-group approach, this study examined 75 children with cancer or brain tumors and their parent. In-person interviewer-assisted surveys assessed sociodemographics, psychosocial factors, and QOL. Child clinical characteristics were obtained through medical record abstraction. Regressions were performed to determine factors related to parental QOL.

Results

Children’s activity limitation and active treatment status were associated with worse parental mental QOL (5.4 and 4.4 points lower, respectively; P < 0.05). Adding parental psychosocial characteristics to the model eliminated the relationship between child clinical characteristics and parental mental QOL (P > 0.05 for all child characteristics).

Conclusions

While child clinical characteristics appear to be related to poor parental QOL, this relationship was mediated by caregiver burden and stress. Interventions to reduce burden and stress may mitigate the deleterious effects of caregiving. Systematic screening of parents’ mental and physical health may facilitate interventions and improve the health and well-being of parents and children.

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Abbreviations

QOL:

Quality of life

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Acknowledgments

We would like to thank the families who participated in this study. Special thanks go out to Hilary Spear for her assistance with the literature review for this manuscript and to Diane Puccetti, Peggy Possin, Kristin Casey, Beth Severson, and Peter Knight, who were instrumental in study recruitment. The follow-up portion of this study was administered by Survey Research Shared Services of the University of Wisconsin Carbone Cancer Center (UWCCC), with the help of Nathan Jones and Kathy Peck. This research was supported by a grant from the National Institute of Child Health and Human Development (HD049533, W.P. Witt, Principal Investigator and Waisman Center P30 HD03352, M.M. Seltzer, Principal Investigator), UWCCC Investigator Initiated Trial, and the University of Wisconsin Care for Kids Foundation. Thanks to colleagues Lauren Wisk, Erika Cheng, and Paul Creswell for their careful read and feedback on this paper. We would also like to thank Dr. Youngmee Kim and the two anonymous reviewers for their helpful comments.

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None of the authors has a conflict of interest with this research.

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Correspondence to Whitney P. Witt.

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Litzelman, K., Catrine, K., Gangnon, R. et al. Quality of life among parents of children with cancer or brain tumors: the impact of child characteristics and parental psychosocial factors. Qual Life Res 20, 1261–1269 (2011). https://doi.org/10.1007/s11136-011-9854-2

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