Breast Cancer :: Critical gaps in breast cancer patient education and communication

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 Wengstr?m, 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 K?ssler, 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.?

About The GAEA Initiative and Patient Survey

The GAEA Initiative is a collaboration between ESO, EONS and Novartis Oncology.? The survey, which is part of the Initiative, set out to determine post-menopausal patients’ knowledge about the risk of recurrence in early breast cancer, define their understanding of the purpose of adjuvant endocrine treatment, their attitudes towards adjuvant endocrine treatment and to identify their informational and support needs and how these can be met. Europa Donna, the Breast Cancer Coalition, acted as a patient advocacy resource to the GAEA Initiative.

The GAEA patient survey was conducted among post-menopausal breast cancer patients undergoing adjuvant endocrine therapy in nine European countries: Austria (n=34); France (n=92); Germany (n=82); Hungary (n=34); Italy (n=90); Spain (n=71); Sweden (n=36); Switzerland (n=12) and the United Kingdom (96).? A total of 547 questionnaires were analysed.? Women were eligible to complete the survey if they had been diagnosed with early breast cancer (defined as localised to the breast tissue and/or nearby lymph nodes), were post-menopausal, currently receiving adjuvant endocrine treatment that commenced at least one year ago.?

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