Drs Jane Fox and Belinda Yeo
The Breast Cancer 2021 Summit was a well attended on-line event, held in July as Melbourne managed its penultimate lockdown of that year. Both clinicians and consumers joined the online Summit, with 85 active participants engaging in identifying and prioritising opportunities to improve Victorian breast cancer care and consumer experience.
The consumer-led patient experience video was a powerful addition to the data presented at the Summit, highlighting the need to improve care for patients with metastatic disease (95% of participants providing feedback thought the video provided a good understanding of patient experience).
The Summit data and consumer presentations identified variations in care and/or outcomes across local Integrated Cancer Services (ICS) and, importantly, limitations in data reporting which impact understanding the real burden of breast cancer for the State and for service planning.
The clinical working party re-convened after the summit to review the findings and conclusions of the day, and to identify strategies to implement quality improvement. The working party agreed on three priorities for further investigation and action by local ICS and multidisciplinary team member in collaboration with other stakeholders.
The clinical working party agreed that the Summit data presentation demonstrated an unacceptable number of breast cancer patients reported with unknown stage at diagnosis, and that this may impact the ability to know if patients are receiving optimal care. The working party has recommended reducing the number of patients with unknown stage reported in the Victorian Cancer Registry from 10% to 5% or less.
Actions to enhance the reporting of breast cancer stage will include undertaking a re-analysis of patients reported as un-staged with the Victorian Cancer Registry (VCR) to better understand what data is collected in different regions, and how it is reported to the VCR.
Currently a proportion of breast cancer patients will have TNM staging information recoded after surgery, post neoadjuvant therapy, suggesting those with unknown stage were more likely to have advanced disease or particular molecular subtypes of breast cancer . Additional action to identify individuals receiving neoadjuvant therapy and ensure that pre-treatment staging is recorded will increase the accuracy of the data collected, leading to a better understanding of the burden of disease and survival patterns.
A clinician group has been formed and is working with the VCR to progress this prioritised variation.
The second prioritised variation is the under-reporting of patients with metastatic breast cancer, impacting provision of appropriate services, including multidisciplinary review and supportive care. It is recommended that a patient’s first metastatic breast cancer event be made reportable to the VCR.
Currently, only de novo metastatic breast cancer data is collected, resulting in the under-reporting of metastatic breast cancer. Metastatic breast cancer burden, treatment and survival information is currently ‘invisible’ to the State and for those who work in service planning. There is also no established metastatic breast cancer pathway of care for these patients, who may live for many years beyond diagnosis. Actions to enhance the current reporting of metastatic breast cancer may be facilitated by a clinical working group. A group could further investigate what data is collected and how it is reported to the VCR to identify gaps and where this can be enhanced in relation to the reporting of all breast cancer metastatic disease. Identifying a process for mandatory reporting of first metastatic breast cancer will support more accurate reporting of patient number.
The third and final prioritised variation from the Summit is access to supportive care services and coordination of care across the State. Increasing access to breast care nurses (BCNs) through improved utilisation of funded positions across the State will better support consumers, facilitate referrals and coordinate care. Actions will include determining how BCNs are funded and how resources are allocated across each ICS to identify gaps. Identifying models and strategies to reduce administrative tasks/time, and building skills and knowledge to support patients with early breast cancer and metastatic disease can be addressed through consultation with BCNs.