Table 4 Key findings from the qualitative study

Emotional distress

All of the men interviewed showed increased levels of emotional distress to varying degrees due to being on active surveillance

“You are told that you have cancer but that it’s nothing to worry about and that all they are going to do is watch it to see how it grows. That just doesn’t make sense; if something can be done prior to it spreading, why isn’t it being done? It freaks you out.” (Interviewee 5, aged 72)

Lack of information and knowledge

Part of the reason for the increased levels of emotional distress seemed to be attributed to a lack of understanding and lack of information received about active surveillance

“If they had said what active surveillance is then perhaps I might have understood it a bit better, but they just said we will keep an eye on it every 6 months. You know, keeping an eye on it could mean a blood test, a meeting with the consultant, another biopsy. I was in the dark and it is the not knowing, the lack of information, that is what worries you”. (Interviewee 13, aged 71)

The need for additional support in the form of a support group

The men interviewed explained their access to Prostate Cancer experts is limited and therefore access to a group of men also under active surveillance would be helpful

“You know, you see the hospital doctors very infrequently so for me I always viewed my GP, who I have known for years, as my first port of call when I needed to better understand things relating to active surveillance and my tests and stuff. But the problem I found was, and I don’t mean to be rude, he [the GP] didn’t know any more about active surveillance than me so you are kind of left in this horrible place where no one has the ability to answer your questions or fears so meeting up with other chaps on active surveillance in a confidential and educationally focused group would be a real coup for me” (Interviewee 12, aged 58)

The need for additional support in the form of a website

Men wanted to play an active part in helping themselves and would value self-management information in the form of a website

“If prostate cancer specific information was available on the web, then that reassures people. Things like frequently asked questions, situations and symptoms to look out for, advice on what you can do to help manage it [prostate cancer], advice about diet, changes that I ought to be making. Things of that nature really, things to allow me to self-manage this [prostate cancer]” (Interviewee 1, aged 71)