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Prostate Cancer UK worked with Guy’s and St. Thomas’ Hospital to identify ways to support men and their families in understanding active surveillance and reducing treatment anxiety. This project was funded by The Movember Foundation.
Active surveillance is a way of monitoring localised prostate cancer, rather than treating it straight away. Many treatments for prostate cancer can cause long term side effects and have a big impact on men’s daily lives. Men choosing to go on active surveillances won’t have any treatment unless their tests show that their cancer may be growing – avoiding or delaying the side effects of treatment.
However, active surveillance can increase anxiety levels for some men who find it difficult not having treatment for prostate cancer. Some men choose to have treatment even though their cancer doesn’t require it. Being on active surveillance also means that men will continue to have regular tests to monitor their prostate cancer and this too, can cause worry and anxiety.
Guy’s and St. Thomas’ Hospital offered pre treatment education sessions for prostatectomy and hormone therapy but reported high levels of anxiety in men asked to consider active surveillance and a lack of understanding about how their prostate cancer was monitored. The hospital felt a similar approach for these patients would improve this and enable men to make informed choices about their treatment.
Using the existing pre-surgery seminar as a template, Prostate Cancer UK worked with clinical staff to develop a seminar aimed at explaining the methods used to monitor prostate cancer and the way in which test results were analysed and communicated. The seminar programme included input form a variety of speakers including consultants, nursing staff, physicists and psychologists and was designed to be an interactive session for both patients and their family members/partners.
The sessions ran on a monthly basis and all newly diagnosed men offered active surveillance were required to attend on an ‘opt out’ basis – the seminar was simply another clinic appointment and attendance was expected.
Those attending completed pre and post seminar questionnaires rating their levels of understanding and levels of anxiety before and after the session. Staff also monitored the number of calls to the hospital helpline from prostate patients as well as any impact on 1:1 appointments required by active surveillance patients after the seminar.
- 74% of men saw a measurable improvement in the understanding of active surveillance
- 92% of family members/partners saw a measurable improvement in the understanding of active surveillance
- In 2014, 41% of patients attending belonged to the high at risk Black African/African Caribbean community
- In total, 362 people attended active surveillance seminars
Following the success of this partnership, Prostate Cancer UK funded a further 12 active surveillance seminars at a further reduced cost with support from The Movember Foundation.
We also developed a post treatment and a point of discharge seminar programme in conjunction with local primary care. The service has helped develop a model for supporting men across the prostate cancer pathway at Guy’s Hospital which has been shared across other London NHS Trusts.