Positive impact of a patient information booklet about BRCA genetic testing

As far as we know, this is the first time it has been attempted to assess the impact of a single standardized patient information booklet distributed throughout a whole country at cancer genetic consultations. The aim of this study was to assess the impact of this booklet on several aspects of women’s decisions about BRCA genetic testing.

This French national multi-centre survey included all women with cancer to whom a BRCA1/2 mutation research had been proposed. The control group was surveyed before the booklet became available (n=263), and the experimental group, after being given it personally (n=297).

In addition to a consultation providing more tailored information, a standardized written document improved the decision-making process involved in giving informed consent to genetic testing. It led to an increase in satisfaction with the information provided, and to a decrease in the level of decisional conflict due to lack of information. The increase of knowledge was marginal and the booklet was found to strengthen patients’ decision to undergo the tests.

Standardizing the delivery of information designed to complete cancer genetic consultations in the form of a document validated both by doctors and patients seems to be a promising method of improving patients’ satisfaction and saving health care resources (time involved for design and publishing). Organizing its distribution via a national network of consultants may also reassure “at risk” families in a given country that considerable coordination is going on among health care providers. 

Bibliographical reference:

Mancini  J, et al.: " Impact of an information booklet on satisfaction and decision-making about BRCA genetic testing", European Journal of Cancer, Volume 42, Issue 7, May 2006, Pages 871-881 

Julien Mancini and Claire Julian-Reynier

INSERM UMR379, Epidemiology and Social Sciences Unit, Paoli-Calmettes Institute, Marseille, France