Education and attitudes in families with adult polycystic kidney disease.

The availability of methods for early accurate identification of individuals at risk of developing adult polycystic kidney disease (ADPKD) has raised a number of important clinical problems. As part of a project on clinical and genetic aspects of ADPKD, we have assessed the knowledge and attitudes of patients and their families. Most had a poor knowledge of the condition and its implications. Despite this, many were in favour of early, including antenatal, diagnosis. A videotape was therefore introduced as part of an educational programme to improve patients' knowledge. This resulted in a marked improvement in understanding of the condition. Although a significant number still wished to consider early diagnosis in their offspring, very few would consider terminating an affected pregnancy.