Development of the Royal Marsden Hospital Paediatric Oncology Quality of Life Questionnaire

Abstract

Our objective was to develop a health-related quality of life measure for use in pediatric oncology. The development process followed the EORTC Quality of Life Study Group (QLSG) guidelines but utilized a parental proxy rating methodology developed within the framework of the EORTC QLSG. Data are reported on the preliminary stages of development, which include interviews in the target population, specialist review of questionnaire content and initial results on the psychometric structure of the measure. The questionnaire has been translated from English to Swedish and Dutch and is available for international field testing. Suggestions for further development of the new measure are described, including the need for parallel forms for use with children and adolescents as well as the parental proxy rating form described here.