Yvonne Wengstrom1, Alberto Costa2, Jan Koedam3, Vasoulla Georgiou 4
1 European Oncology Nursing
Society and Karolinska University Hospital, Stockholm, Sweden, 2
European School of Oncology, Milan, Italy, 3 Novartis Oncology,
Arnhem, The Netherlands, 4Adelphi International Research,
Bollington, UK
AET is used
in the treatment of women with hormone responsive BC to reduce the risk of recurrence.
Little is known about womenÕs experience of and knowledge about AET. The GAEA (Gathering Information on Adjuvant Endocrine therApy) Initiative aims to delineate
womenÕs knowledge and experience of AET and develop programmes targeted at meeting their needs. A survey was
carried out with the aim of determining BC patientsÕ knowledge about and attitudes towards AET, ascertaining
their informational and support needs while taking AET and defining how best to
meet these needs. The survey involves a qualitative
and quantitative phase and is being conducted in 9 countries (Austria, France,
Germany, Hungary, Italy, Spain, Sweden, Switzerland, and UK) that represent
different regions of Europe and different size countries. A literature search
was undertaken to define the issues to include in a qualitative discussion
guide about womenÕs experience of AET in early BC. The discussion guide was
piloted, translated into the survey languages (English, French, German,
Hungarian, Italian, Spanish and Swedish) and face-to-face interviews were
carried out with 32 patients currently taking AET for early BC in 8 of the
survey countries (Switzerland was not included). The aim of these interviews
was to identify the correct parameters to explore, and language to use, in the quantitative
survey. The women interviewed had varying levels of knowledge about their
disease and its treatment and many said that their informational needs were not
met. Few were involved in treatment decision making. The majority said that
they accepted the side effects associated with AET in return for the peace of
mind that their disease would not return. On the basis of these findings a
number of hypotheses were identified and used to guide the development of a
quantitative questionnaire. This questionnaire has been translated and pilot
tested in the survey languages. It will be administered to between 500-525 post-menopausal
women currently taking AET for early BC in the 9 European countries between
May-June 2006. Data will be analysed using descriptive and cross-tabulation
statistics. The results will be available in August 2006.