At the Prostate Cancer Foundation of NZ, we see first-hand how good information makes all the difference to both outcomes and patient experience of healthcare. The choice of treatment pathway for those diagnosed with the disease can span from no treatment at all, right through to the full range of interventions including surgery, radiotherapy and systemic approaches. Working out what the best pathway is for each man involves the exchange of a wide variety of information between healthcare professionals and patients as they strive to make the most appropriate decisions in order to achieve the best outcomes.

To find out more about this, we have teamed up with the University of Waikato to carry out the first nationwide study of the information that is given to prostate cancer patients, how it is provided and how we might improve the experience for healthcare professionals, patients and their families.

We are inviting men who have been diagnosed with prostate cancer to take an online survey that asks about the information they received at key points in their diagnosis and treatment, whether they felt it was too much or too little, whether it was useful or not, and how much of a difference they feel it made to the healthcare they received and the outcomes they have experienced.

Patient Information Study: How do prostate cancer patients access and understand diagnositic and treatment information?

Matthew in Wellington found himself experiencing anxiety and distress through his own treatment for prostate cancer. From the initial detection of a concerning PSA level by his GP, he progressed through a biopsy, then surgery and most recently chemotherapy and hormone treatment. When he started experiencing concerning side effects from hormone treatment, he found good information hard to come by.

“I didn’t know where to turn. My health team were hard to reach and when I did talk to them, they didn’t seem to accept that what I was experiencing was the result of the hormone therapy I was receiving. I was in a bad place mentally and emotionally, and I didn’t feel as though anybody was listening.”

Matthew has reached out through the Prostate Cancer Foundation Online Forum and videos of our national conference presentations to further educate himself about hormone treatment. He thinks the results of the study will be valuable. “Good and timely information is essential to get through the experience of treatment and anything we can do to improve the availability of this to patients is worthwhile.”

“We know from research overseas that the more actively involved patients can be in their treatment decisions, the better the outcomes they experience” says Peter Dickens , Chief Executive of the Prostate Cancer Foundation of NZ. “However, patients can’t be actively involved if they haven’t received and fully understood all the information they need. We’re really excited to be partnering with the University of Waikato to conduct this study, as we believe it holds real potential to improve patient experiences and outcomes across the country.”

If you have been diagnosed with prostate cancer, we’d love to hear from you. To take the survey, please click on this link.  If you would like to take the survey over the phone, please email Felicity from the University of Waikato at fcampbellsmith@gmail.com to arrange a time. For more information on the study, please email Dr Tania Blackmore from the University of Waikato at tania.blackmore@waikato.ac.nz

The study is a short, anonymous online survey. It’s easy to take part, just click the button below. It will take about 10 minutes but please persevere, the information you will provide is valuable.