Influence of proxy respondents and mode of administration on health status assessment following central nervous system tumours in childwood.
Central nervous system (CNS) tumours account for 20% of childhood cancers.
Survivors often experience severe physical, neuropsychological and social sequelae of the disease and its treatment.
Health status asessment in these individuals is an essential clinical outcome measure, yet little consensus exists regarding the optimum methodology.
The influence of proxy respondents (parents, physiotherapists and doctors) and mode of administration (home and clinic) in which assessment is performed has been evaluated in a cohort of 37 survivors of childhood CNS tumous.
A health-related quality of life (HRQOL) questionnaire, incorporating the Mark II and III Health Utilities Indices, was completed at home and in clinic by patients and parents.
Doctors and physiotherapists completed this questionnaire plus Lansky Play-Performance and Karnofsky Performance scores.
No significant differences between raters for single attribute scores occured either at home or in clinic, although a wide range of agreement (kappa=0.05-1.00, percentage agreement 53-100%) beween observers was revealed.
Most agreement occurred between parents and patients : this was greatest on home completion (kappa=0.48-1.00, percentage agreement 53-100%). Doctors and physiotherapists agreed less on subjective attributes (emotion, cognition and pain).
Better agreement between all observers was demonstrated if responses were classified as normal or abnormal. (...)
Mots-clés Pascal : Tumeur, Maladie, Système nerveux pathologie, Evaluation, Méthodologie, Questionnaire, Santé, Technique mesure
Mots-clés Pascal anglais : Tumor, Disease, Nervous system diseases, Evaluation, Methodology, Questionnaire, Health, Measurement technique
Notice produite par :
ORS Auvergne - Observatoire Régional de la Santé d'Auvergne
Code Inist : 002B30A11. Création : 16/10/1997.