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Co-designing a prostate cancer support portal

The BroSupPORTproject is 12 months into a 24-month cycle and was funded by the Victorian Agency for Health Information (VAHI).

The Prostate Cancer Outcomes Registry-Victoria (PCOR-Vic), funded by Movember, was tasked with designing a portal that would help men living with prostate cancer. It aims to address how information and patient-reported outcome measures (PROMs) can be provided back to the patient.

PCOR-Vic collects quality of life surveys from men with prostate cancer. At the end of the survey (once men have answered questions about their urinary-, bowel- and sexual function, and quality of life) patients are advised to contact their treating doctor, GP or the Cancer Council Information and Support line if they want further advice on managing their symptoms. They are thanked and informed that the information they provide will help other men in the future. Research staff at the Registry saw an opportunity to provide more assistance to these men – to enable them to be informed and to help them self-manage their symptoms through a reputable source.

The project was set up to understand the sort of information men want to receive, how they want to receive it and whether they would like to compare their quality of life results with other men who have been through a similar journey to them. The Registry surveys men 12 months after their treatment. If men haven't had treatment, they are surveyed 12 months from their diagnosis – the survey primarily targets survivorship. If a man is still experiencing problems 12 months later, it may be an indicator that something should be followed up or at a minimum, reviewed.

The portal acts as a one-stop shop to help men self-manage and understand their disease more. Called a portal and not a website, and developed in conjunction with Movember and VAHI, BroSupPORT will be accessed by men after they complete their PROMs through PCOR-Vic. The Registry is population-based and provides a systematic way to address challenges reported by patients in the survey. BroSupPORT will be piloted to understand whether it meets men’s needs by addressing information gaps. BroSupPORT will be assessed on the extent to which men like and find value in the information supplied through 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.

There are two phases to the BroSupPORT project. During the co-design phase, qualitative work was undertaken. Focus groups were held with clinicians and health professionals, and five two-hour long co-design workshops were held with men. One workshop was also offered to men and their partners. Some of the initial findings from these workshops are 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.

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 (the latter being unclear for patients). The portal also intends to provide information to alleviate patient anxiety around treatment and what to expect. While individual health services may have processes and resources for their patients, there’s no formal statewide mechanism for providing this sort of information to men with prostate cancer.

The Registry has approximately 87% population coverage of men diagnosed with prostate cancer in Victoria. The portal will direct men to already available quality resources where they exist.

During the co-design workshops, men unanimously declared that they want to be able to look at how their quality of life survey results compare with other men. After men complete the survey, they will be able to compare their urinary, bowel and sexual function to other men in the Victorian population. This will be a consent-based, voluntary option. It will compare patients of similar age, stage of disease, and treatment type. It will allow men to see that they are comparing favourably to the population or other men like them, which can alleviate anxiety and normalise what they're going through. If a patient isn’t comparing favourably, it might catalyse change by prompting a patient to seek additional resources or a follow-up appointment.


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