INFLUENCE OF PROXY RESPONDENTS AND MODE OF ADMINISTRATION ON HEALTH-STATUS ASSESSMENT FOLLOWING CENTRAL-NERVOUS-SYSTEM TUMORS IN CHILDHOOD

Central nervous system (CNS) tumours account for 20% of childhood canc ers. Survivors often experience severe physical, neuropsychological an d social sequelae of the disease and its treatment. Health status asse ssment in these individuals is an essential clinical outcome measure, yet little consensus exists regarding the optimum methodology. The inf luence of proxy respondents (parents, physiotherapists and doctors) an d mode of administration (home and clinic) in which assessment is perf ormed has been evaluated in a cohort of 37 survivors of childhood CNS tumours. A health-related quality of life (HRQOL) questionnaire, incor porating the Mark II and III Health Utilities Indices, was completed a t home and in clinic by patients and parents. Doctors and physiotherap ists completed this questionnaire plus Lansky Play-Performance and Kar nofsky Performance scores. No significant differences between raters f or single attribute scores occurred either at home or in clinic, altho ugh a wide range of agreement (kappa = 0.05-1.00, percentage agreement 53-100%) between observers was revealed. Most agreement occurred betw een parents and patients: this was greatest on home completion (kappa = 0.48-1.00, percentage agreement 53-100%). Doctors and physiotherapis ts agreed less on subjective attributes (emotion, cognition and pain). Better agreement between all observers was demonstrated if responses were classified as normal or abnormal. Inter-observer agreement was gr eater for the HRQOL questionnaire than for Karnofsky and Lansky scores . Home completion of questionnaires provides a reliable, acceptable an d convenient method of assessing health status.