WOMEN diagnosed with early breast cancer often report feeling overwhelmed by information. They can often feel scared about their future due to the diagnosis, which can be further compounded by not understanding the options or treatments being presented to them.
It is widely accepted that patient involvement in decision making is a component of best practice medicine; however, due to the complexity of the options, health professionals may take a more directive approach. Conversely, with the anxiety and stress of a breast cancer diagnosis, patients may not be as involved in the decision-making process as they would prefer.
Women with early stage breast cancer are now frequently offered neoadjuvant systemic therapy (NAST) as part of their treatment. NAST is suitable for women with large operable or highly proliferative breast cancer, particularly those with HER2 positive or triple negative disease. Overall, because the survival outcomes are equivalent between NAST followed by surgery versus the reverse sequence, patients can be offered a choice in their treatment at a time when their situation and future often feels out of their control.
More recently, post-neoadjuvant trials (here and here) have shown that the poor prognosis associated with lack of response to NAST can be salvaged with additional treatment after surgery. This post-neoadjuvant concept has been a game-changer, leading to more patients with previously poor prognostic subtypes being offered NAST.
It is a time in early breast cancer diagnosis when the patient’s preference and values influence treatment choice as much as the oncological outcomes. However, interviews with patients have shown they don’t often feel well enough equipped to be making this decision. Without being provided with the right information, in the right format, a shared decision-making process between patient and treatment team is harder to achieve and can add to the distress the patient is already experiencing.
The Breast Cancer Trials Neoadjuvant Patient Decision Aid was born out of the need to provide patients with relevant and accurate information, in patient-friendly language. It is modelled on extensive patient decision aid literature showing improvements in preference-based decision making and decision-related outcomes. This includes reducing decisional conflict, increasing patient knowledge, increasing their involvement in decision making, and improving their understanding of risks associated with the options.
The Neoadjuvant Patient Decision Aid was created by a multidisciplinary team and further evaluated and refined in the Breast Cancer Trials DOMINO clinical trial. DOMINO aimed to find out if a decision aid could help to give women objective information about adjuvant and neoadjuvant treatment for breast cancer and if a decision aid could help them to make a confident decision about their own treatment.
The study found that patients appreciated the information format and found it useful in the shared decision-making process with their clinician. It was able to be easily integrated into the care pathway, typically being used after the surgeon had referred the patient to a medical oncologist to discuss NAST. Breast care nurses, if available, had substantial impact on the delivery of the decision aid. Patients described the information provided as reliable, relevant, sufficient and tailored to their needs. In summary, DOMINO found that women who used the Neoadjuvant Patient Decision Aid, in consultation with clinical consultations, had improvements in their decision-related outcomes.
In an effort to further tailor the information provided in the decision aid, the Neoadjuvant Patient Decision Aid has now been converted into an online tool. This allows the information to be personalised to the individual patient’s breast cancer type, make notes and highlights as they make their way throughout the decision aid and complete a questionnaire to help them reflect on their choice at the end of the decision aid. Their completed questions, highlights and notes are all summarised in a document in PDF format that is then emailed to the patient, with the intention that they will bring this information to their next appointment with their treatment team to discuss their thoughts.
The Neoadjuvant Patient Decision Aid is not intended to change a patient’s mind about their treatment, rather to present an evidence-based view of their options and ensure their treatment choice is aligned with their particular circumstance. It informs patients about their options for the timing of their treatment and surgery, presents them with statistics on each choice dependent on their breast cancer type, and gives information on why they might choose to have treatment before surgery, and the pros and cons of having surgery first. For example, the likelihood of a complete pathological response (no cancer in the resected breast or lymph nodes) varies from 5% to 65% depending on the cancer subtype, and prognosis along with subsequent treatment is informed by the knowledge of response.
It is hoped this resource will enter into routine practice by being introduced in treatment planning appointments with surgeons and breast cancer nurses. It is recommended that patients review the decision aid between their initial consultation with their surgeon and before their appointment with their medical oncologist to ensure they are getting the most out of the resource.
The DOMINO clinical trial showed that patients who reviewed the decision aid didn’t change their treatment decision on NAST. It did however confirm their treatment decision. We know this shouldn’t be underestimated, as the confidence gained by the patient in this process has a flow-on effect for their psychological wellbeing. Equipping patients with the tools and knowledge to actively engage in shared decision making, through tools such as the Neoadjuvant Patient Decision Aid, will contribute to better outcomes for our patients.
The Neoadjuvant Patient Decision Aid and the DOMINO clinical trial were funded by the HCF Research Foundation and supporters of Breast Cancer Trials, and the development of the new online platform was supported by an educational grant by Roche.
To access the Neoadjuvant Patient Decision Aid, visit: www.myneoguide.com
For more information about Breast Cancer Trials, visit: https://www.breastcancertrials.org.au/home
Dr Nicholas Zdenkowski is a Medical Oncologist clinician researcher with an interest in breast cancer. He is Conjoint Lecturer in the School of Medicine and Public Health at the University of Newcastle, is the medical advisor at Breast Cancer Trials, and practices at the Breast and Endocrine Centre, Maitland Private Hospital and Lake Macquarie Private Hospital in the greater Newcastle region. He can be found on Twitter @NickZdenkowski.
The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or InSight+ unless so stated.