Collecting quality of life data in EORTC clinical trials--what happens in practice?

Abstract

Problems with poor compliance when collecting quality of life data (QoL) in randomised clinical trials have prompted investigators to suggest measures to improve data collection. This study sought to look at the practical problems encountered by data managers and nurses in the cross-cultural setting of EORTC trials. A literature search was followed by a poster workshop session at a meeting of the EORTC study Group on Data Management and finally a postal questionnaire. The key problems identified centred around the lack of interest from some clinicians, lack of resources, inadequate protocols and a desire for training in the rationale for collecting QoL data to aid discussions with patients. Despite these problems many data managers and nurses found it rewarding to be on the 'frontline'. Since this study, the EORTC Data Center and in particular the Quality of Life Study Group and the Quality of Life Unit have implemented a number of measures to improve compliance. These include written guidelines for EORTC trials and a training course planned for Autumn 1999.