Current approaches to assessing the quality of life in children and adolescents

SUMMARY Urologists are well aware of the importance of the quality of life (QoL) in determining the success of their treatments. The public are increasingly aware of this aspect of medicine. The advent of fetal ultrasonography has made knowledge of QoL in long‐term survivors of congenital anomalies essential in counselling about pregnancy termination. It is becoming mandatory that clinical trials involving adults include an assessment of QoL. For children, measuring QoL has been restricted to life‐threatening conditions such as cancer or transplantation medicine. Measuring QoL is difficult in children and adolescents, and this is reflected in the few suitable instruments available. The development of sexuality contributes a further difficulty as many anxieties typical of those with genital anomalies may be common to all teenagers. Several instruments rely on the opinions of a proxy (parent or carer) but self‐assessment by the child is preferable where possible. The need for child self‐assessment is supported by finding little concordance between child and proxy assessments. While measuring QoL is challenging, we provide a substantial case for greater consideration of QoL in paediatric urology.