Empowering women to make informed decisions about their breast cancer treatment
Dr Nicholas Zdenkowski and his team at Breast Cancer Trials Ltd (formerly known as Australia and New Zealand Breast Cancer Trials Group) created a decision-making tool for women who are offered pre-operative chemotherapy for early stage breast cancer. With help from the HCF Research Foundation, their research has tested the tool and shown its effectiveness in a clinical setting.
Difficult decisions after a breast cancer diagnosis
More and more women with early stage breast cancer (that has not spread beyond the breast and nearby lymph nodes) are being offered chemotherapy and/or hormone-blocking therapy before surgery (known as neoadjuvant systemic therapy). Advantages of this order of treatment include down staging from mastectomy to lumpectomy; more opportunity for consideration of immediate breast reconstruction in women still requiring mastectomy; improved understanding of prognosis based on the woman’s response to the treatment; time to plan for the optimal surgical approach surgery; and opportunity to participate in neoadjuvant clinical trials.
However, the decision to undergo treatment prior to surgery also brings its challenges. Even though the neoadjuvant approach is effective and safe, some patients may fear starting chemotherapy, the psychological impact of leaving a tumour in place rather than immediate surgical removal and the worry of adverse prognosis if the tumour does not respond to chemotherapy.
Previous studies conducted by Dr Zdenkowski’s team have shown that women who were offered therapy before surgery were not as involved in the decision, or as informed, as they would have liked, and that they would value a tool to support their involvement in the decision.
Tackling the problem
Substantial research in the past has shown that decision aids help patients achieve better health outcomes, but there previously has not been a decision aid available to women considering neoadjuvant therapy. Dr Zdenkowski’s team created an evidence-based decision aid in the form of a document including an overview of treatment options, pros and cons of those options, text and graphical representations of outcome probabilities, a values clarification exercise and references to reliable further information.
The team then conducted a study in which they gave the decision aid to women who were considering neoadjuvant therapy. The women were given questionnaires before and after they used the decision aid, between chemotherapy and surgery and 12 months after enrolling in the study.
Women who participated in the study – and so used the decision aid – had increased confidence in their decision, greater involvement in the decision, and decreased distress and anxiety.
- 80% of women in the study read the decision aid and found it useful
- 89% of the doctors who participated in the study said that they would keep handing out the decision aid document after the study had ended.
This research has resulted in a resource that is now available to support women who are faced with very difficult decisions at a particularly stressful and vulnerable time of their lives. This resource is being distributed widely, free of charge, to help women with breast cancer receive health care that is most suitable and in line with their values and preferences. Leading breast cancer organisations in Australia – including Breast Cancer Trials Ltd and Breast Cancer Network Australia have endorsed the decision aid and provide access to it via their websites.