*Yvonne
Wengstrom1, Alberto Costa2, Susanna Leto3, Vasoulla Georgiou 4 1 European
Oncology Nursing Society and Section for Nursing, Karolinska Institutet,
Stockholm, Sweden, 2 European School of Oncology, Milan, Italy, 3
Novartis Oncology, Region Europe, Origgio, Italy, 4Adelphi
International Research, Bollington, UK
AET
is used in the treatment of women with hormone sensitive EBC 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
to determine BC patientsÕ knowledge about and attitudes towards AET,
ascertain their informational and support needs while taking AET and define how
best to meet these needs. The survey, which consisted
of qualitative and quantitative phases, was conducted in 9 countries (Austria,
France, Germany, Hungary, Italy, Spain, Sweden, Switzerland, and UK) that
represent different regions of Europe and different size countries. During the
qualitative phase 32 patients currently taking AET for EBC were interviewed to
identify the correct parameters to explore, and language to use, in the
quantitative survey. A quantitative questionnaire was developed on the basis of
the findings from these interviews. This questionnaire was translated and pilot
tested in the survey languages and women from the survey counties with
post-menopausal EBC and currently taking AET were invited to take part in the
survey. A total of 546 women
completed a questionnaire. 71% of those surveyed were between 51-70 years of
age - 13% were 71 or over. The majority of respondents were retired and only
44% had internet access. On
average respondents had been taking AET for 2.6 years. Only 33% of women over
71 years of age were made aware of treatment options whereas 55% of women 60
years or younger were made aware of AET options. 57% of women over 71 years old
were not at all involved in the decision to start on AET (average of 41%). In
stark contrast only 22% of women 50 years or
younger were not at all involved in decision making. Those who were not
involved in decision making were much less likely to be satisfied with their
level of involvement. They were also less likely to have been given information
about AET. Overall younger women, women with a higher level of education and
those with internet access were more likely to have received information about
AET. Respondents looked for information about BC from a wide range of sources,
however, older women utilised much fewer sources of information than younger
women. Women from 61 years onwards were much more likely to indicate that
treatment with AET had no impact on their everyday life – younger women
were much more likely to indicate that it had a slight to large negative
impact. Women with EBC need comprehensive and accurate information about
different AET options in order to make informed choices. This research has
highlighted gaps in meeting EBC patientsÕ informational needs and revealed the
limited extent that women are involved in treatment decision-making, especially
older women. Efforts are required to meet the informational and decision-making
needs of the older women with BC.