Quality of life assessment in the International Breast Cancer Study Group: past, present, and future

The past: Since 1986, the IBCSG has been accruing a comprehensive longitudinal health-related quality of life (QL) database in addition to biomedical data of patients with early breast cancer who are receiving or have received adjuvant treatment. Our aim is to establish QL as a complementary outcome in randomized clinical trials and to gain new insight in biopsychosocial interactions. In regard to methodology, the IBCSG has made major contributions to the field through the development of global indicators, cross-cultural validation, impact of timing of assessments and working on practical and statistical issues relating to missing data. The present: In two large-scale clinical trials (IBCSG VI and VII) adjuvant chemotherapy (CMF) had a measurable effect on health-related QL, but contrary to expectations this effect was transient and minor compared with the effect of patients' adjustment and coping after diagnosis and surgery.

In addition to the assessment of health-related QL, the IBCSG is currently developing and applying a global indicator for a patient-derived adapted utility concept in order to better assess the cost-benefit ratio of adjuvant treatment. However, the real challenge for the immediate future is the question how patients' adjustment can be fostered within primary care.