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Tonic Life Communications
Large European survey reveals critical gaps in breast cancer patient education and communication
ISTANBUL, Turkey, 30 September 2006 -- Results from a recent survey of European women with early breast cancer, presented for the first time at the European Society for
Medical Oncology (ESMO) congress, show that the information needs of patients are not being met and that there is an unacceptably low level of patient involvement in potentially life-extending treatment
decisions. The survey revealed that older women, those with a low level of education and those without Internet access are particularly uninformed.
"Our survey shows that information provided to patients about adjuvant endocrine therapy is sub-optimal", says GAEA steering committee member Yvonne Wengström,
President of the European Oncology Nursing Society (EONS) from the Karolinska Institute, Stockholm, Sweden. "Health professionals are a highly trusted source of information for patients yet the
survey has shown that patients were not given comprehensive information about the rationale for treatment and the potential consequences of treatment. Indeed many patients were not even told about the
available treatment choices. The patients who took part in the survey told us that they want to have more information about treatment and especially side effects."
The survey, part of The GAEA Initiative, involved 547 post-menopausal women with early breast cancer from nine European countries. It was designed to find out women's
knowledge and understanding about adjuvant endocrine (hormone) therapy and their risk of recurrence, their involvement in treatment decision making and their information and support needs. Adjuvant
endocrine therapy is given after breast cancer surgery to reduce the risk of recurrence and is usually continued for at least five years. There are different types of therapies available, each of which
has a different risk-benefit profile for the patient. Patients need to know the purpose of adjuvant endocrine treatment and the different risk-benefit profiles of each therapy so that they can make an
informed choice.
"As doctors we are clearly failing some patients by not involving them in the decision about starting adjuvant endocrine therapy and by not giving them the information
they need to make these decisions", says Dr Alberto Costa, Director of the European School of Oncology (ESO), Milan, Italy and GAEA steering committee member. "This is not effective medical
practice. On the basis of these findings, ESO will develop initiatives aimed at helping doctors hone their communication skills and become more effective in meeting patients' needs."
Only 22% of patients were fully or highly involved in the decision to start adjuvant endocrine therapy with the lowest levels of involvement found in women over the age of
60 years. Many of the women who took part in the survey were not satisfied with the degree to which they were involved in treatment decision making.
Not surprisingly, women who were the most actively involved in the decision to start hormone treatment were provided with more information on side effects and treatment
duration compared to women who were not involved. Actively involved patients also received more information on the benefits of taking long term adjuvant therapy and the risk of their breast cancer
returning.
"We know from past experience that well informed and active patients get better treatment", said Ingrid Kössler, President of Europa Donna – the European
Breast Cancer Coalition. "These results expose a clear knowledge divide among breast cancer patients. Better education begins with better communication, and we need to work harder to address this
situation to meet the needs of older and less well-educated women."
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