EMBRACING THE VOICE OF BCNA CONSUMER REPRESENTATIVES Breast cancer researchers
THE POWER OF TEXT MESSAGES AS PART OF FOLLOW-UP CARE AFTER TREATMENT PUT TO THE TEST Project: EMPOWER SMS study Researcher: Anna Singleton, The University of Sydney Consumer Representative: Christine Mitchell After her breast cancer diagnosis in 2005, Christine Mitchell’s life spun into a whirlwind of treatments and a hectic schedule of regular meetings with oncologists and her surgeon. While she was happy to be handed back into the care of her GP at the end of her intensive treatment, Christine says it’s important people feel a sense of continuity of care after the intense treatment phase to help you live your best life.
‘There’s so much focus on you and so many people caring for you, and when the treatment phase stops, some people can think, “Who is looking after me now?”,’ says Christine. As a BCNA Consumer Representative, Christine jumped at the chance to use her experience to help inform the design of EMPOWER SMS, a clinical trial into the benefits of receiving regular mental health and healthy living text messages for six months after treatment. The texts also include links to free services, websites and programs that promote health and fitness and generate medication reminders. EMPOWER SMS is the brainchild of Dr Anna Singleton, NHMRC Emerging Leadership Fellow and Senior Research Fellow at the University of Sydney. While a PhD student and research associate, Anna worked on the project under the supervision of breast surgeon and head of research at Westmead Breast
In the study, 80 women received four EMPOWER SMS texts each week for six months, and 80 women received none of the text messages. The trial found those receiving the EMPOWER SMS missed fewer doses of medications compared to those who didn’t receive the messages, 90 per cent found it useful, 67 per cent said it motivated them towards healthy lifestyle changes and 52 per cent said they increased their physical activity levels. ‘By age 50 many women have seen others go through breast cancer treatment and a great deal of women gain weight,’ Christine said. ‘Often women resign themselves to this fate and don’t make the lifestyle changes to help them manage their weight. ‘That’s where EMPOWER SMS was so effective in providing reassurance that they are doing all they can to improve their chances of survivorship and living a better quality of life.’ EMPOWER SMS is currently being rolled out at the Westmead Breast Cancer Institute. You can read more about the study here .
E nsuring people BCNA’s trained consumer representatives (CRs) work with breast cancer researchers, advisory committees, policy makers and service providers across Australia, ensuring that the diverse views, needs and experiences of people affected by breast cancer are considered in research and decision making. affected by breast cancer have a voice is central to everything we do at BCNA. CRs can choose to work on a range of projects, including supporting grant applications, providing input on research projects, advisory committees and information resources. The Beacon spoke to two consumer representatives about the exciting research projects they are involved in. FINDING YOUR WAY THROUGH METASTATIC BREAST CANCER – ONLINE Project: Finding My Way – Advanced randomised control trial (RCT) Researcher: Lisa Beatty, Flinders University Consumer Representatives: Louise Sinclair and Chantal Van Der Linden Can an online psychosocial program improve mental quality of life for people with metastatic breast cancer? Flinders University researcher Lisa Beatty and her research team wanted to find out. BCNA Consumer Representatives Louise Sinclair and Chantal Van Der Linden – who have metastatic breast cancer (MBC) – became curious too, after they were invited as advisers on a study with the research question: can the online program called ‘Finding My Way - Advanced’ lead to
improvements in quality of life for people with MBC when used in addition to BCNA’s My Journey? As part of the Finding My Way – Advanced trial, they contributed feedback to the program’s content and the user experience.
longer and access to support services such as this program are needed more than ever.’ If you are interested in this study, you can get more information and sign up at findingmywayadavanced. org.au or by contacting study coordinator Emma Kemp emma.kemp@flinders.edu.au , or phone 08 7421 9954.
The program includes personal
accounts from women living
with MBC, videos from healthcare professionals, self- management activities, audio relaxation and mindfulness, and information on navigating healthcare, changes to self-image and identity, concerns for family and friends and living with uncertainty and fear of progression. Chantal said she became involved with the trial as part of her role as a consumer representative because of her passion for ensuring people living with MBC have a voice and are made visible. ‘This online program is a much- needed tool for those who have been diagnosed with metastatic breast cancer, and provides support on diagnosis, treatment and living well,’ she said. ‘It is an additional tool to what is provided on BCNA’s My Journey, and assists women with guided self-help activities, information and interactive features. ‘It is important that programs such as Finding My Way – Advanced are offered, as people with metastatic breast cancer are living
Cancer Institute, Associate Professor Elisabeth Elder.
MAKING A DIFFERENCE TO BREAST CANCER RESEARCH If you want to participate in the latest research projects to help improve breast cancer treatment and care, consider joining BCNA’s Review & Survey Group. Find out more here .
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March 2023 | Issue 94
Breast Cancer Network Australia
bcna.org.au
Issue 94 | March 2023
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