Long-term sequelae after pediatric brain tumors: their effect on disability and quality of life

In an unselected series of pediatric brain tumors, 56 of 60 long-term survivors--craniopharyngiomas and pituitary tumors excluded--were investigated and interviewed mean X = 10 (5-16) years after diagnosis. After this time, sequelae were stable and included cognitive (38%), motor (25%), visual (20%), hormonal (20%), and psychological-emotional (14%) dysfunction. Memory dysfunction was found in 22% of patients with normal intelligence. Moderate or severe disability, from combinations of these impairments, was found in 34%. Sixty-six percent had no or mild disability compatible with active life and employment. However, these patients less often were married or had children compared with a control group of healthy subjects. Moderate and severe disability was found in 48% of supra- and in 21% of infratentorial tumors, after radiotherapy (RT) in 55% vs. without RT in 18%. RT before 6 years of age caused subnormal IQ in all cases. The self-reported quality of life was not related to degree of disability. Patients with psychological-emotional sequelae self-evaluated their quality of life lower than did patients with other types of long-term sequelae.