Studies on health-related quality of life in childhood cancer in the European setting: an overview.

Since the beginning of the 1990s there has been a growing interest, in the European setting, in evaluating health-related quality of life (HRQL) in clinical studies. Assessing HRQL in childhood cancer survivors, in particular, is a new field of research. Studies of survivors of leukemia and brain tumors are of special interest since these are the commonest groups of survivors of cancer in childhood. Initial reports suggest that most of the survivors of childhood cancer are in good health with a normal psychosocial status, social life and capacity to cope with activities of daily living. More discriminative evaluations identify a number of subtle problems, such as cognitive deficits in brain tumor survivors or anxiety about a recurrence (especially) in children who have had megatherapy and autologous bone marrow rescue. In this group, pain is also a lasting problem in about one-third of patients. The main problem in these studies is comparability as the study designs vary widely. Little information is available with respect to inter-observer agreement, which is important since it is known that proxy respondents will under- or over-estimate components of the HRQL of the child. The most important base for further development of HRQL research is communication between researchers, in order to exchange experience and to avoid duplication of effort. Communication is necessary also for combining interests and forces in developing a standardized methodology as well as for conducting collaborative studies using equivalent measures.