Psychosocial aspects of risk communication and mutation testing in familial breast-ovarian cancer.

Abstract

PURPOSE OF REVIEW: As cancer genetics services develop, psychosocial research evaluating risk communication and mutation testing for familial breast-ovarian cancer has expanded rapidly. It is timely to review findings in key areas. These will inform risk counselling practice and help prepare women making risk management decisions. RECENT FINDINGS: The psychological effect of risk communication and genetic counselling has been elucidated and women's risk perceptions explored. Knowledge of optimal risk communication strategies is lacking, but recent research shows both consistency in information giving and deficiencies in specific communication skills; the need for personally tailored risk information, which addresses counsellees' concerns, is highlighted. Outcome assessments of risk communication, such as risk perception and psychological distress, are useful but insufficient to evaluate the complex communication process, and decision making in this context is underresearched. Subsequent diffusion of risk information and interfamily communication pose difficulties for high-risk individuals. The short-term psychological consequences of predictive mutation testing are an important focus of research and are largely reassuring, but long-term outcomes are sparse. SUMMARY: Our understanding of the psychological benefits and limitations of risk counselling and mutation testing can now inform clinical practice, but insufficient knowledge exists of long-term outcomes. Most women are unlikely to be distressed following risk communication, but some may need psychosocial support in the short term following predictive testing for BRCA1/2. Different approaches to risk communication need to be developed and evaluated in parallel with communications skills training to ensure an adequate focus on the women's agenda.