Comparison of screening instruments for disability and emotional/behavioral disorders with a generic measure of health-related quality of life in survivors of childhood brain tumors.

The sensory, motor, educational and emotional/behavioral outcomes in 32 survivors of childhood brain tumors were evaluated by examination, interview, questionnaires on emotion/behavior and the Health Utilities Index Mark 2 (HUI 2). Thirty-eight percent had moderate/severe disability, and this was associated closely with special educational provision. Pre- and peri-operative factors were the commonest determinants of disability. Fifty percent had a high score on the emotion/behavior questionnaires, suggesting a high risk of an emotional or behavioral problem. The HUI 2 discriminated well between those survivors who had and those who had not had special provision made for their education but poorly between those with high and those with low scores on the emotion/behavior questionnaires. Previous studies have found self-reported health-related quality of life to be related more closely to emotional/behavioral sequelae than to disability. Possible uses and limitations of the HUI 2 in this clinical context are discussed. Copyright 1999 Wiley-Liss, Inc.