The BroSupPORT project is a collaboration between the Victorian Agency for Health Information (VAHI); Monash University as the managers of the Prostate Cancer Outcome Registry-Victoria (PCOR-Vic); Movember as funders of PCOR-Vic and as developers of an existing web portal which will be used for this project; and Alfred Health as the nominated Victorian public health service lead.
The aim of this project is to co-design, build and test a ‘one-stop-shop’ patient portal to help men with prostate cancer. The project will investigate the sort of information they want to receive, how they want to receive it and whether they would like to compare their quality of life (patient-reported outcomes (PROs)) results with other men who have been through a similar journey to them.
These PROs are collected from men with prostate cancer through the PCOR-Vic registry. This surveys men 12 months after their treatment, or 12 months from their diagnosis if they haven’t had treatment. If a man is still experiencing problems 12 months later, it may be an indicator that something should be followed up or at least reviewed.
The ‘one-stop-shop’ patient portal will be piloted during the ‘development’ phase of the project to understand whether it meets men’s needs and assess the extent to which men like and find value in the information supplied in the portal. Eventually, it may be that men recently diagnosed with prostate cancer can also access the portal as a resource when they're making treatment decisions.
The co-design design phase was recently completed.
Findings from the co-design phase
During the co-design phase, qualitative work was undertaken. Five co-design workshops were held with men with prostate cancer, with an additional workshop held with men and their partners. Focus groups were also held with clinicians and health professionals from metropolitan and regional Victorian public health services that are involved in the treatment of prostate cancer.
Findings revealed that men’s priorities shift over time. They have a diagnosis and treatment point, and then after-treatment and survivorship priorities. For the survivorship stage, the priority is helpful, practical and trusted advice on dealing with erectile dysfunction and incontinence.
During the co-design workshops, men with prostate cancer unanimously declared they would like to compare their quality of life (PROs) survey results with other men in the Victorian population. The co-design workshops recommended a consent-based, voluntary option to allow comparisons for patients of similar age, stage of disease, and treatment type. It will allow men comparing favourably to the population of other men like them, to be reassured, while for those who are not comparing favourably, it can help by guiding patients to seek additional resources or a follow-up.
Next steps: the development phase
The next phase, which will conclude in June 2021, is to build and evaluate the ‘one-stop-shop’ patient portal concept developed in the co-design workshops. The portal aims to not only provide information to address side effects apparent after treatment (such as incontinence, impotence, and bowel problems) but also information on how to access assistance for a range of issues, including but not limited to topics such as poor mental health, obtaining sexual aids, obtaining financial assistance, and which health professional to see, because all these aspects may be confusing. The portal also intends to provide information to alleviate patient anxiety around treatment and what to expect.
Over 6,000 men are diagnosed in Victoria each year with prostate cancer and the vast majority will be ‘survivors’. Reaching and providing support for these men is important, and the ‘one stop shop’ patient portal – which has been codesigned with men with prostate cancer (and their partners), as well as healthcare providers, and registry experts— is an important step forward.
For more information about VAHI’s PROs program, please contact Louise Kelly, Acting Manager of Clinical Registries and Patient Reported Outcomes via firstname.lastname@example.org.