Long‐term sequelae after pediatric brain tumors: Their effect on disability and quality of life

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Abstract
In an unselected series of pediatric brain tumors, 56 of 60 long‐term survivors—craniopharyngiomas and pituitary tumors excluded–were investigated and interviewed × = 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.