Capturing users' experiences of participating in cancer trials

Randomized controlled trials are accepted to be the research design of choice to evaluate the effectiveness of health care interventions and are commonly used to evaluate cancer treatments. There are concerns, however, that levels of recruitment to trials are often much lower than anticipated, particularly in cancer trials. Several research methods have been used to collect aspects of users' experiences of participating in cancer trials. Perhaps the most common method has been through measures of outcome and the impact of treatments on quality of life (QoL), using standardized schedules to capture physical, social and psychological health. In some areas of cancer, individual patient testimonies illuminate particular issues or narratives. Another body of research has grown around issues of user involvement in trials, including surveys of recruitment and participation, as well as investigations of patient preferences and experiences of participation. We searched MEDLINE and the Cochrane Trials Library from 1995 to 2001 for relevant publications. In this article, we review the literature in these areas and examine whether users' experiences of participating in cancer trials can be used to assist in the design or conduct of trials.