Children receiving treatment for brain tumors (such as chemotherapy, radiation and surgery) often experience neurodevelopmental challenges after tumor-directed therapy has concluded. Demands on the family are also high with regard to navigating the school system and coping with other associated medical problems, such as neuroendocrine dysfunction.
Caregivers of childhood brain tumor survivors are at risk for poor quality of life; they're worried, they're tired, and they may be “burned out.” In general, the younger the child, the more extensive the neurodevelopmental issues and, potentially, the more stress on the caregivers.
Researchers at the Center for Childhood Cancer Research, including Matthew C. Hocking, PhD, are identifying predictors of how well children and their families function after treatment for brain tumors, and how researchers can best counsel parents about the challenges they can expect to face.
In one study, children are being followed longitudinally and assessed as they finish tumor-directed treatment. Researchers are collecting measures of neurocognitive functioning, health-related quality of life, family functioning, parental health-related quality of life, survivor emotional behavior and social adjustment, and then determining which variables at the end of treatment predict specific outcomes six to 12 months later.
Studies in other areas such as traumatic brain injury have shown that families that are functioning better at the time of injury tend to have children that do better over time. This study will help determine whether or not different family management variables influence not only survivor outcomes, but also caregiver outcomes in families with a child who has undergone treatment for a brain tumor.
Results from these studies can also be used to inform different types of family-based interventions.