1. Survey Sample
Introduction
This is the first major survey by The Prostate Cancer Charity. It was conducted in order to find out about the experiences of men in the UK who have been diagnosed with prostate cancer within the last two and a half years.
The men’s responses will be used to help us understand more about what happens to men with prostate cancer and to shape the charity’s service provision, policy positions and campaigning. Inevitably, this work will identify areas for further research and clarification.
The project stemmed from the first major piece work done with our (then) recently established User Advisory Group - comprising mainly men with prostate cancer, but also including some members who have a close personal (as opposed to professional) interest.
We knew we had to find out more about the experiences of men with prostate cancer to flesh out, organise and refine our previously more anecdotal understanding of what happened to these men once involved in a health system.
We settled on a model of using the ‘cancer journey’ - a shared shorthand explanation of a process that tracks what happens to men as they become ‘patients’ and their critical incidents, from pre diagnosis to the time of diagnosis, through treatment choices to recovery or stability . Following thisfamiliar pattern, we were able to refine the questions we wanted to ask.
Early on, we decided against researching the experiences of men in palliative care, as we have limited expertise in that area. Whist we do not offer palliative cancer services for men with prostate cancer and have no plans to do so in the short and medium terms, there is clearly a case for developing our understanding of this field and identifying the role we can play during this time in men’s lives. The Prostate Cancer Charity will undoubtedly return to this area with specific projects in the years ahead.
A detailed questionnaire was sent at the end of June to 2,300 men who were diagnosed with prostate cancer at some point since April 2003. All these men had been in touch with us and their contact details were held on our database. A smaller number of men were recruited to the survey via responses to regional press coverage and directly via the Charity’s website. These responses are not included in this report, but will be analysed in due course to see whether there are any differences from those recruited via our database.
We realise that the recruitment of respondents already known to the Charity does create a sampling bias. Men who have been in touch with us may have particular information seeking behaviour or expectations that are different from the many more men with whom we are not in contact. They may have fewer complaints than the un-sampled men, as they may be regarded as taking greater control of their own experience of the health care system. Conversely, they may have more, as their contact with the Charity may mean they have a more skeptical or questioning attitude, less likely to be easily satisfied.
We argue that the results shown here are in fact broadly consistent with other studies sampled differently, notably the National Audit Office report, ‘Tackling Cancer: Improving the Patient Journey,’ published earlier this year (February 2005).
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