Findings from largest ever prostate cancer survivor survey in Ireland highlight need for a better patient experience

The Irish Cancer Society has undertaken the largest ever survey of prostate cancer survivors in Ireland and analysed the experience of 1% of the 20,000 men who are living with a prostate cancer diagnosis.

Findings from largest ever prostate cancer survivor survey in Ireland highlight need for a better patient experience

• More than 50% of men say side effects worse than expected
• Almost 50% of men unprepared for emotional toll of prostate cancer
• 31% of men did not receive support from a specialist nurse to deal with side effects

Download the full results at the bottom of this page.

Irish Cancer Society says it is time to end the silent suffering
The Irish Cancer Society has undertaken the largest ever survey of prostate cancer survivors in Ireland and analysed the experience of 1% of the 20,000 men who are living with a prostate cancer diagnosis. The survey has found that low levels of information and support at almost every stage of the cancer journey has led men to make life-changing decisions without fully comprehending the severity of the physical and psychological side-effects. The Irish Cancer Society is developing a ‘patient charter’ in response to the findings, which will recommend ways to improve men’s prostate cancer experience. The funding for this survey came from donations from the 2010 Movember campaign.

Across all the pre-diagnosis, pre-treatment and post-treatment stages, men reported a desire for more information and support. However, it was the severity of the side-effects experienced by men in the post-treatment stage that has revealed the lasting impact of a prostate cancer diagnosis.

Up to a third of men received no support for side effects from a specialist prostate cancer nurse.

Ninety-eight per cent of men experienced side effects as a result of their treatment for prostate cancer, which is not unexpected. Over 75% of men experienced urinary, bowel or sexual side effects. There was a relatively high level of awareness amongst patients that these were likely consequences of treatment. However, more than 50% of men described the side effects as worse than expected. Overall, 33% of men said that they were unprepared for the physical side-effects of treatment and 46% were not prepared emotionally.

Additionally, respondents were not prepared for the loss of their libido with 54% saying it was worse than expected and 55% reporting that impotency was worse than expected. Only 15% of men were offered support for problems around their mental well-being caused by changes to their body and sexual function. Nearly 25% of men described support as ‘inadequate’. Over one third were not offered any support from a specialist cancer nurse for their side effects and more than half of men were not offered support for problems with mental well-being. Almost three quarters (72%) of men who experienced depression found it to be worse than expected and only 10% were offered support for this.

The effect of a prostate cancer diagnosis on a physical relationship was significant. Sexual relationships ended for 46% of men and while a third of respondents were no longer intimate with their partner, a third reported that their relationship with their partner grew stronger. Tension and estrangement were also features in relationships where prostate cancer was present.

The evidence shows that a negative experience at any stage of a patient’s prostate cancer journey generally leads to a bad experience overall and this may explain why the men who reported severe or unexpected side effects, were often the ones who also described poor pre-diagnosis and pre-treatment experiences.

Two thirds of respondents felt that the implications of prostate cancer were not explained to them at the time of their initial GP visit.
Two thirds of respondents felt that the implications of prostate cancer were not explained to them at the time of their initial GP visit. The Irish Cancer Society will be working with GPs to understand how this can be improved.

Twenty per cent of men who were alone when they received their diagnosis, were not expecting to be diagnosed at that time.
When men were asked about their experience at the time of diagnosis, 50% of men received their diagnosis of prostate cancer alone, however sixty-two per cent of these men made a conscious decision to do this. Twenty per cent of the men who were alone, did not realise that they were receiving their cancer diagnosis at the time it was given to them. Only 56% of men felt they were told they had prostate cancer with sensitivity. As part of another project with the hospitals to identify gaps, the Irish Cancer Society says it is investigating whether this finding could be influenced by a doctor’s workload, time spent with patients at diagnosis, environment (privacy) and access to a specialist nurse. The good news is that the survey results show that the experience of men during investigation stage has begun to improve over recent years.

Forty-eight per cent of men identified just one party being involved in their treatment decision. Only 19% of men were given a chance to speak to a nurse about their treatment decision, which is not in line with NICE recommendations which state that prostate cancer patients should have access to a specialist uro-oncology clinical nurse. The NICE guidance, which was published in the UK in 2008, highlights the important role that nurses play in explaining the complexity of the disease, the treatment options that are available and meeting some supportive care needs.

Decision making is a key source of stress for men and their partners and many men ask their doctors to make the decision for them because it is so difficult. The Irish Cancer Society believes that the challenge for health services is to enable these men be active participants in making decisions about their treatment.

Irish Cancer Society developing ‘Patient Charter’.
The findings of the Irish Cancer Society / Millward Brown Lansdowne survey funded by Movember, which was carried out during June and July 2011, generated responses from 218 prostate cancer survivors. The Irish Cancer Society carried out the survey in response to phone calls from prostate cancer survivors to the National Cancer Helpline (1800 200 700) and feedback at patient seminars. Callers reported that they needed more support and information from investigation right through to treatment and beyond.                                                                                   

Responding to the findings uncovered by the survey, the Irish Cancer Society said that while the results were upsetting, they were not unexpected. “We had heard anecdotally through the National Cancer Helpline and Men Against Cancer (MAC), that men’s prostate cancer journey was not altogether positive,” said Mr John McCormack, Chief Executive Officer of the Irish Cancer Society. “We wanted to establish sound data that could be analysed, interpreted and used to address the needs of men and their partners who are living with prostate cancer. Therefore, we used Movember funding to commission Millward Brown Lansdowne to carry out this survey.

Based on the findings, we will be developing a Patient Charter over the coming weeks that will set out our recommendations for prostate cancer patients, from investigation right through to treatment and beyond. We know that the medical community is doing the best job it can with the resources available so we will be working closely with hospitals to see what services are currently available and where gaps exist.”

The Irish Cancer Society said that the findings clearly highlight some areas where improvement has to be made so that men are supported, informed, and their experience improved. The Society said that clinical changes, such as providing access to a specialist nurse in support of side-effects, would make significant positive changes to a cancer journey.