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 sur vivors of childhood brain tumors were evaluated by examination, interview, questionnaires on emotion/behavior and the Health Utilities Index Mark 2 (H UI 2), Thirty-eight percent had moderate/severe disability, and this was as sociated closely with special educational provision. Pre- and peri-operativ e 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 betwee n 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 s cores on the emotion/behavior questionnaires. Previous studies have found s elf-reported health related quality of life to be related more closely to e motional/behavioral sequelae than to disability. Possible uses and limitati ons of the HUI 2 in this clinical context are discussed. Int. J, Cancer Sup pl, 12:106-111, 1999, (C) 1999 Wiley-Liss, Inc.