What information do breast cancer screening programmes provide to Italian women?

BACKGROUND The necessity for building transparent communications on screening, both on risks and benefits, is shared by different sides. There is a general agreement that women cannot express informed participation in a screening programme unless they are given sufficient and adequate information. In the screening context, invitation letters and leaflets often represent the principal source of information. METHODS The invitation letters and leaflets used by 60 Italian breast cancer screening programmes were collected and evaluated through a score sheet developed to verify what kind of information is provided to women. RESULTS Fifty-three programmes (88.3%) answered and 47 (78.3%) were included in the analysis because of completeness of the material. Nearly all the programmes provide satisfactory practical information and explanations about the test and the screening aims. Few programmes mention the possibility of some discomfort during the exam (34.0%), quality assessment and operator training (10.6%), double reading (6.4%), radiation risk (6.4%) and data confidentiality (6.4%). 68.1% provide information about recall but none describes what a further assessment involves. Epidemiological and numerical information are present only occasionally. CONCLUSION Although satisfactorily disclosing some practical information, Italian invitation letters and leaflets remain inadequate in managing side effects and risks. If accurate information has the potential to enable women to make an informed choice, the information inviting them to perform screening test must be improved. Further researcher is needed to evaluate different decision aids to meet women's desires for balanced information. KEY POINTS Women cannot express informed participation in a breast screening programme unless they are given balanced information both on benefits and adverse effects. Current information screening tools often omit relevent data, fail to give information about pros and cons and ignore uncertainties. Despite these considerations, how much information should be given and how this should be framed remains still to be defined. Further evalutions of different ways of presenting information and women's information needs are urgently required.