The Breast (2007) 16, 462–468 THE BREAST ORIGINAL ARTICLE Patients’ knowledge and experience of adjuvant endocrine therapy for early breast cancer: A European study Yvonne Wengstro ¨m a,Ã , Matti Aapro b , Susanna Leto di Priolo c , Helena Cannon d , Vasoulla Georgiou d a European Oncology Nursing Society & Department for Neurobiology, Care Science and Society, Division for Nursing, Karolinska Institutet 23300, 141 83 Huddinge, Sweden b European School of Oncology & Doyen IMO Clinique de Genolier, 1 route du Muids, 1272 Genolier, Switzerland c Novartis Farma S.p.A., Largo Boccioni 1, 21040 Origgio, Italy d Adelphi International Research, Adelphi Mill, Grimshaw Lane, Bollington, Cheshire , SK10 5JB, UK Received 12 February 2007; accepted 28 February 2007 KEYWORDS Adjuvant endocrine therapy; Decision making; Early breast cancer; Information needs; Post-menopausal; Recurrence risk Summary Little is known about patients’ experience of, and knowledge about adjuvant endocrine therapy. A European survey was carried out to explore this knowledge gap. The 547 post-menopausal women with early breast cancer, from 9 European countries, completed a questionnaire about their experience and knowl- edge of their therapy. Forty one percent of women surveyed were not at all involved in the decision to start adjuvant endocrine therapy and only 10% were fully involved. Only 57% received information about possible side effects, 26% about the risk of their cancer returning and 15% about the possible long term effects of treatment. Older women, less educated women or those without Internet access were less likely to receive information or be involved in decision making. Women’s right to information and involvement in decision making are not respected. Greater efforts are required to ensure that all patients understand how different therapies work so that they can make informed decisions. & 2007 Elsevier Ltd. All rights reserved. Introduction Patients who have had curative surgery for early breast cancer are still at risk of recurrence. 1 Use of adjuvant endocrine therapy in hormone responsive ARTICLE IN PRESS www.elsevier.com/locate/breast 0960-9776/$ - see front matter & 2007 Elsevier Ltd. All rights reserved. doi:10.1016/j.breast.2007.02.007 Ã Corresponding author. Tel.: +468 517 758 41; fax: +46 8 517 760 95. E-mail address: Yvonne.Wengstrom@ki.se (Y. Wengstro ¨m).