When I was diagnosed with prostate cancer I needed to have some decent information
I didn't want to rely on what the doctor had provided. I wanted quality information about a very significant decision... whether to have surgery or not. I was aware of the issue of the consumer perspective, and evidence and that Cochrane can be a reliable source of evidence. I knew there were reviews and protocols; reviews around interventions and around styles of communication etc.
I consulted Cochrane pretty much in the final stage in looking for information. It really confirmed what I had already found. It all came down to the decision about surgery and what sort to have. The information I first found from other sources was good but I went to the next stage to find out what the success rates of different sorts of surgery were. It was the next level of reassurance in a sort of decision tree.
I had had a biopsy and after the urologist gave me the diagnosis he said that before I go to see him again I should get some background information from the cancer council. I downloaded significant parts of a publication from their website over the weekend. I also looked at something called a decision aid, a publication by the association of urologists. When I went to see the surgeon he gave me a full explanation. Then because I had an aggressive form of cancer it came down to an obvious choice about surgery, whether to have the "open cut mining version or the robotic laparoscopic version."
I was looking into what the success rates were for the different options. So I went to the next stage of searching; searching in Google scholar and looking at research with a GP friend. I looked at PubMed, and some systematic reviews. That all gave me a sense that the surgeon's experience makes a big difference in the operation; that the side effects of laparoscopic are less, and over 12 months the outcome is better; though the patient journey may be the same. I went ahead with the operation.
My sense was that the Cochrane review I consulted confirmed what I had already found from other sources. In retrospect maybe it wasn't the full review, it was the protocol but it had a decent lit review and that confirmed what I had been told.
So the Cochrane review was another layer in the decision making. If I hadn't had it I probably would have still gone with that decision but it was the next level of reassurance and what I had been scraping around looking at was the real picture rather than a slice of the picture.
It's a very complicated decision. In the end side effects were the biggest thing to consider, they are the ultimate outcome in this situation. I used the research to see whether the other information I had consulted had got it right. I started from a good base point. When I was looking there was good quality information even though there wasn't the ultimate. It was good quality information, it was well set out. I was impressed and I was in a situation where I could be quite critical. So what's the research saying? Did they get it right in the documents?
Searching Cochrane is frustrating. Well I felt, "There must be more." And there is a technical issue with searching Cochrane: the search box is so small, it's unbelievably annoying. The whole thing is based on searching and it's based on the crappiest little box on the whole web. So you go back to your search term and try to do it again and it doesn't even stay there for you to edit. If it's longer than 15 characters it just disappears off the end. It's extraordinary!
I knew how to search in a review. I used the abstract most of the time and read the full review if it was relevant. Over time I use more and more of the abstracts as you've got more of the basic information, and just want confirmation or a new angle. I started with the documents from the Cancer council and the urologists' association so in a way the core was there; so I searched: what type of surgery, what are the side effects, what works in rehabilitation etc.
So I consulted Cochrane after the initial consultation but while waiting, while making a decision about which types of treatment. The other really valuable information which is not... you don't find in the literature and you don't find in a Cochrane review are things like the "My Journey Kit" and "Hope and Hurdles," the breast cancer material, which I think is the best consumer information in Australia. It's that mixture of easy to read basic information about the condition plus all those women's stories and quotes, and you get a real sense that you're not alone. There's a lot of women who have been through this but people's journeys can be quite diverse. There's not just one way to do this. And there was a sense of hope; it's pretty grim some of that stuff. There was a kind of a sense of a collective journey which would be strengthening. So it's interesting to contrast the value of the Cochrane stuff. I think it's fantastic but I think you need the other stuff.
I had already come with a lot of information when I first met my surgeon. When I came to see him to say I wanted to go ahead with it he wasn't surprised to hear that I had consulted the literature, or a Cochrane review or whatever, I'm not sure whether I mentioned the Cochrane review. But I did when I was having my pre-med check - you know when you go in the day before - I met the registrar then and he said, “Oh why did you decide to have laparoscopic surgery?" I said I'd read a whole lot of reviews on Pub Med and I'd read a Cochrane review. He said "Oh my God you're the first patient I met who read a Cochrane review!" He was very impressed.
Being well informed did change the treatment offered and undertaken. I think it's a very important to be well informed. Once it was clear that I had access to that information, they would give me more information. I had a tape recorder that really helped; putting that on the table. I actually never listened to it; I didn't mean not to listen to it., I just didn't actually need it because I had so much information. But I think it made a significant difference; in terms of being a partner in decision making. The first bloke that I saw wasn't at all put out that I went to his colleague because I preferred his type of surgery; he understood that decision.
All that information as a whole, not just Cochrane stuff, was very significant. It is a very significant condition that I had to do something about. I couldn't ignore it. It's not trivial at all, it's the most significant health decision I've ever made. It was very empowering, very reassuring; it wasn't straight forward; it wasn't the sort of thing you could go and have a chat with the doctor then make your mind up. I had to read all the stuff and be convinced I'd made the right decision about surgery, about the type of surgery, about the rehab stuff. I think I had a very positive frame of mind. I'm sure that had an impact too, in the way that I did get better quickly too. I had no problems at all. As much as one can feel in control and empowered knowing where you are going. It was very significant. When I could see the effect on my family, they were quite...they were really anxious. Perhaps more anxious than I was.
I would go back to The Cochrane Library but I would not check regularly. I have told others about it and have gone back to look for my Dad.