Emma's story

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I looked at the Cochrane Library because I needed to make a decision about whether to repair my shoulder injury. I fell off my bicycle and hurt my shoulder. I thought the serious injury was my elbow and I ignored my shoulder. The pain was there and I'd never really had much pain before, so I just thought if I do a bit of exercise and rested it from time to time it'd just go away. But it didn't go away and I sought advice from several different physiotherapists - I had an ultrasound and found I've got a torn tendon, a full thickness, half tendon tear. I looked around online to find a lot of information, and it got to the point where I needed to make a decision about whether to have an operation or not. Information seemed to be saying rotator cuff tears don't repair by themselves even if you do all the exercises in the world. Then a sports medicine doctor and a physiotherapist said I was considered young enough for a repair to have a good outcome, so I relied on their experience.

So it was a fairly clear cut thing I needed to decide. I know about the Cochrane Library and I knew what information was there. I didn't go and look in the library until there was a clear decision to be made. I guess because I knew what sort of information was there. When a decision needed to be made, what I found was a bit grey. I was hoping to find that surgery is a great idea, but what I did find was that there were different sorts of surgery - arthroscopic or open surgery, so instead of it helping me to make the decision about whether to have surgery or not, it came down to, "Will you have this sort of surgery or that sort of surgery?" Ultimately the thing that I first wanted to make a decision about, whether there was a treatment that would completely fix my shoulder and remove the pain, was a bit grey.

I looked at one review which was relevant. There was another review that was highly relevant but it was withdrawn which was disappointing, but there was still a little bit of information there. I looked at an individual study (from the first review) because it seemed more relevant than others so I went through the CENTRAL database to look at individual studies.

Searching the Cochrane Library I did a simple key word search (rotator cuff repair and shoulder surgery) for reviews then searched individual studies. I wanted there to be more reviews. I thought, "There can't be just that one review." So I tried a MESH search.

You sort of have to be in the know about systematic reviews and Cochrane. They're hard to find. They don't necessarily spring up in Google searches. You have to know they are there. I remember when I first came to systematic reviews on the Cochrane Library I found them quite impenetrable and not knowing whether you were looking at the abstract or the review.

In a systematic review I looked at the plain language summary first, because that's what's presented and I found the little bit of description quite good. But then the results were wishy-washy and it didn't really help. I thought there's got to be more than this, it can't just say there's not much difference between this and that. I wasn't convinced. So that's when I consulted the background section of the review, and that was fantastic because it gave me all the background I really wanted, or confirmed other things I had read; it made it really clear what the options were and also defined terms I hadn't necessarily come across before. But then I went to the forest plots.

They're highly technical. Some of them now are in colour which is really good, because, here's the line between surgery and no treatment (surgery). You can see quite clearly that it is in favour of surgery or not. And that was really what helped.

But then it's very confusing because they give you results quite clearly, and individual studies appear to be giving you results, but then the overall review gives you a different conclusion, which for the average person is pretty confusing. The quality (of studies or the research) issue is really important and one can completely skim over it.

I had had a lot of visits to physios and the doctor prior to seeing the surgeon at the hospital. So I looked just before seeing him to help make the final decision about whether to have an operation or not and what sort of operation to have. I found that consulting a systematic review, or saying you have, changes the nature of the consultation. Seeing the surgeon (in the public health system, the hospital) as soon as I mentioned Cochrane it completely changed. I found that they like you to be informed but they don't want you to be too informed.

I said, "When you do the surgery what do you actually do?" Because I knew what they do and I knew the terms, having read the background of the Cochrane review. They debride the bone, which means basically getting a rasp and taking off some bone. Because of the injury it's caused other sorts of compensatory things so you end up getting a build up under the bone at the front of the shoulder, so any time you raise your arm you're impinging things and there's a pain reaction there. But he wouldn't use the terminology; he wanted to gloss over it. He said, "I am really good at the arthroscopic surgery." I found that interesting that he didn't want to engage with me knowing too much about the detail. So perhaps he's used to people not knowing so much (in the public health system?).

It was empowering to have information, to feel like a partner in the process with the doctor I think. In another health issue with my husband, a more serious issue than mine, we reached a threshold of information we wanted to know because we'd been through all the information and presented the doctor with questions and we got to a point to where some alternatives sounded grim. We said thanks, we'll just sit with that.

Ultimately it was very empowering to have the information and to let them know that you are on the track. It's more like a partnership in the process, and it's great they know where you're at and perhaps they feel they can tell you more. Although there was a sense of empowerment, there was no clear decision. I think it's about being empowered about having the knowledge, the knowing. Ultimately though I am still confused, because there's conflicting information in the review or different qualities/levels of information, so I know that arthroscopic surgery is better that open surgery but I still am not convinced that surgery is the way to go. Now the ball is in my court. At least I feel as though when I do make a decision it's sort of based on the sort of evidence that's there and is a strange feeling of empowerment and indecision.