Neurocognitive and Family Functioning and Quality of Life Among Young Adult Survivors of Childhood Brain Tumors

Abstract

Many childhood brain tumor survivors experience significant neurocognitive late effects across multiple domains that negatively affect quality of life. A theoretical model of survivorship suggests that family functioning and survivor neurocognitive functioning interact to affect survivor and family outcomes. This paper reviews the types of neurocognitive late effects experienced by survivors of pediatric brain tumors. Quantitative and qualitative data from three case reports of young adult survivors and their mothers are analyzed according to the theoretical model and presented in this paper to illustrate the importance of key factors presented in the model. The influence of age at brain tumor diagnosis, family functioning, and family adaptation to illness on survivor quality of life and family outcomes is highlighted. Future directions for research and clinical care for this vulnerable group of survivors are discussed.

Keywords:

• Brain tumor
• Pediatric cancer
• Family functioning
• Cognition
• Quality of life

Acknowledgments

This work was supported in part by “Mothers as Caregivers for Survivors of Pediatric Brain Tumors,” NINR R01 NR009651-01A1, P.I. Janet A. Deatrick, Ph.D., FAAN, and by “Quality of Life of Adolescent and Young Adult Survivors of Brain Tumors,” funded by the Oncology Nursing Society, PI Janet A. Deatrick.