Olivia's story

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It's not easy to say why I consulted a systematic review on The Cochrane Library. I've got a chronic condition that I have had for a really long time now and a lot of the information that I need is not on The Cochrane Library. I've got Lupus and there are basically no reviews on lupus. So what I tend to do is consult the library for very specific treatment decisions. For instance when the Non-steroidal (NSAIDS) were shown to cause strokes and heart attacks I looked for a review that lined them up to make a risk/benefit kind of decision about them. I've also looked for things like quality of life (QOL), for fatigue and pain control. Again these reviews often aren't for people with lupus so it's quite difficult to work out whether they apply and how different the disease is. So that's always been a challenge for me.

So I guess that I've always felt that evidence- based medicine doesn't hold out for my treatment so much. So I tend to rely a lot on the doctors I see. But I do a lot of reading as well. Because it's a fairly rare disease there's not a lot of literature on it, or good quality literature at least.

I was diagnosed nearly 11 years ago, so I was quite young. I was into science and had no idea that this sort of work (such as Cochrane reviews) existed. It was shortly after being diagnosed that I found out about Cochrane and thought what a good idea. And that's when I started looking for information in an ongoing way. So I do regularly check to see whether there is something coming up that is useful, but there rarely is.

I guess the difficulty that I face is that I am on a whole lot of different medications and there are a whole lot of lifestyle modifications that I should make to manage a disease like lupus but there is no information on the kinds of treatment that are most effective for particular outcomes like pain control and long term prognosis. And my lupus has been a little unusual, you can expect that it would go into remission in a couple of years and it might just have instances or flare ups, but mine hasn't done that and that's always been a bit of a mystery. So I am certainly an atypical case of an unusual disease. So I don't think I'm going to find the magic review that applies to me and that tells me what to do.

When I consult The Cochrane Library I am not expecting to find the magic review that that tells me exactly what to do, or says how you manage lupus and pretend it never happened. But reviews of questions about: what are the long term effects of using steroids over 10 years; or which NSAID group is better in terms of long term outcomes for you (given that I have had to start taking these at the age of 22 and am probably going to take them for 60 years!); and what sort of support is most effective to stop you getting depression; what kinds of things will improve your quality of life; how you manage pain best if you've got this kind of musculoskeletal disease? And there are some reviews that deal with the pain and sleep problems but again they're not generally in lupus patients. So I kind of tend to extrapolate from rheumatoid arthritis or multiples sclerosis because they are in a similar kind of family, though the diseases are really quite different in terms of their underlying causes. So I am not confident they will give me the magic answers in the end.

The thing is my rheumatologist is very good and I've seen him for quite a long time. Because I'm a pharmacologist he's always said self-manage your medications, self-manage your health, which is really good in a way, but it's also very difficult when everything is very grey when you're making the decision to take an additional drug or not. So I've wanted to grab those bits of information to help me make the decision in an informed way, rather than to rely on my experience of 5 years ago. For example, "When this thing happened, I did this, so should I do that again; or should I not do it again, or is there a better way to deal with that particular problem or not?"

I have looked at whole systematic reviews generally, rather than individual studies, and there were a couple of really good reviews. I remember using one a couple of years ago on NSAIDs because that was when Viox was withdrawn from the market because it was causing strokes and things and I was on a relative of that drug. I don't think there is a Cochrane review but there is one on another database that did an analysis of what the risk of heart attack and stroke is with these drugs. With a risk of having a stroke at 30 for the sake of fairly marginal pain relief it was fairly easy to make that decision, though this wasn't in lupus patients and in lupus you have higher risk of cardio vascular problems anyway. So I talked to my rheumatologist as well and went back to one of my older drugs. I was thinking that if I am going to be conservative about this the evidence is saying that in normal people taking drugs there may be an extra increased risk so I'd rather not risk it. But that's quite a big extrapolation. So I guess those kinds of drug by drug comparisons can be useful if you have to be on something for a long period. But often they don't give you a clear cut decision.

What about side effects? Even though I'm on these really powerful immunosuppressant drugs a lot I am not so interested in side effects oddly enough. Because you have to take them... you can't get out of bed otherwise. So the choice is not really whether you are going to get side effects or not, it's how you manage the side effects. So the outcomes that would be of most interest to me are pain relief and quality of life and fatigue, rather than osteoporosis or stomach ulcers and all those sort of things, in an odd kind of way.

I was a bit frustrated with some of the outcomes in reviews like how satisfied people felt. I thought, "I don't want to be satisfied I want to be able to work, to be able to move." So, "How satisfied are you?" was not a big issue.

When searching on The Cochrane Library for example, I basically know what to do, I generally use a few key words such as the disease and an outcome, or an outcome, or both. I'll generally screen them if there's a whole lot. Often I'll go to a particular Cochrane review group, so maybe the pain group or the musculoskeletal group, and just skim through the titles of the reviews and protocols. Sometimes that can be a good background to what I am looking for. The musculoskeletal group has got about 75 reviews, so it's pretty fair coverage of things and they have nice lay summaries which are good. If I put in lupus as a search term there are 4 reviews in the whole library that come up and none of them are relevant so it's not as if I have a huge quantity of information to deal with, so I probably don't tend to use the advanced search tool because I simply don't need to screen it that much.

I guess when I have looked for particular drugs in a review I've firstly looked to see if the drugs I'm on are actually there, and whether it's been taken in the population and in a dose that I was actually on. I generally go to the description of studies in the review, and have a quick look at that and maybe skim through the tables, just to see what the population is like and what the medication dose were. So if they have covered that drug and the doses I'd go into the analysis and look at what outcomes they've measured. Then I'd have a quick look at the results, to see if there's anything clear cut.

Systematic reviews are quite stylised too. I have no idea how someone who hasn't read a Cochrane review would look at it. Would it make any sense and would it hold together for them? When you read a variety of systematic reviews from different places the variability in how good they are is amazing. Some are often much shorter, and you really can't find much information about a lot of the outcomes easily, or the populations, or the numbers of participants that were followed up, or any of those really key things. Whereas in a Cochrane review if you look hard enough you will find the information you need somewhere; it just may not be where you expect it to be. You need to be familiar with the format though.

A good review is supposed to take the results of individual studies and give you a clear message overall. Say on a pain scale or quality of life scale, in terms of the result on a graph, a good review should take that result that may appear to be statistically significant and say, "Just because it's a 5 point difference, and it's statistically significant it means nothing." But a lot of them don't and if you're not an expert in that area it is difficult.

I think that sometimes the link between what you find on a graph of results in a review and what the text tells you is not always pulled together in the review to make things clear for the average reader. A review might show a good result on the graph but then all the studies are really really poor and probably not very accurate...and in the text they might say, "Studies were poor quality" but they don't pull it all together and say well actually you probably shouldn't use this treatment because the evidence is not good, and that's not clear enough I think for the average reader. And even if you're just skimming it trying to get a main message out of it, you sort of keep having to put it all together yourself which is really difficult and frustrating. There's not much point doing a review if you have to be that technically accurate as a reader to put it all together yourself.

Have I found anything useful? I was reading a review recently, on the effectiveness of interventions to reduce fatigue, for diseases including lupus. It was actually quite nice because I have read reviews previously on things like that and they say exercise is a great thing for improving energy levels. But they never talk about the fact that you've got a disease that is chronically fatiguing and it's difficult to get through the activities of the daily living let alone develop an exercise program and stick to it. So that was the first review I found where it actually thought about acceptability of the intervention. Even though it didn't have an answer it encouraged me no end to think that the researchers had actually thought that far along it, saying, "This is a fatiguing and disabling kind of thing, so what are the things that would affect whether interventions will work or won't work at all." So I think too often I have read stuff where no thought has been given to the impact that is going to have on your life, and whether in the immediate term it is sustainable. Is it acceptable to you, is it possible for you with a chronic illness to do the things you should be doing?

I am quite lucky because my rheumatologist is very into evidence-based medicine. He loves to talk about Cochrane and stuff, which is annoying at times! He has always been really good when I come to him with questions. When I had questions about drugs and stroke risk he said that it was something reasonable to be worried about: "You are on high risk drugs, we can't put you down to the one that is the lowest risk because you've already been on and off that, so we need to choose something that is a reasonable compromise." I guess he was kind of reassuring about his clinical experience with these drugs too because he does treat a lot of people over decades and hasn't seen many of those side effects. So I guess that's sort of a reassuring thing to hear as well. And he's also happy to answer questions about cardio vascular risk in lupus, all that kind of stuff. So it's quite helpful and it's easy to bring it up that I had looked at reviews or studies. I kind of look for information between visits to the rheumatologist or another specialist.

I don't think seeking information changed my treatment because there are no options. It probably made me feel better that I was having some input into it. I've often wondered whether it's a good thing or a bad thing to know all the risks and benefits of a particular drug when you don't have a choice about taking them and sometimes I think it's actually not very healthy psychologically to know all the risks, but on the other hand I don't think I'd like to be taking stuff without knowing the risks in the longer term as well.

I think I've had negative experiences from asking too many questions of doctors as well as positive ones so I tend to gravitate towards doctors that are happy for me to be informed and are happy for me to ask questions, and not gone back to specialists that are not really very happy to discuss options or things I've read or heard, or the changing evidence.

What did it mean to me to have information? I am just trying to think of when I do have information versus when I don't, which is a big chunk of the treatment decisions I make. I suppose it is reassuring that there is some idea of what goes on in patients similar to me versus pretty much a stab in the dark. And I suppose it's easier for me to read a review than to go and look myself. I do get to the point where I don't want to read any more health information, or anything about the awful things that can happen to you while you get health treatment. It's quite rare that I go home and look up stuff for myself unless I'm seeing a new doctor or I have to make a new decision and even then I might wait and see what the doctor says the options are before I try and look because there isn't much there. So I think I tend to feel a bit isolated because I don't have access to information for a lot of the things I have to think about. But when I do it's quite a help and it's quite comforting.

What about being an informed health consumer? I think one of the side effects of being an informed health consumer though is that people assume you know a lot more than you do. I'm not a clinician but I understand the theory. The reason I go to a clinician is that they can tell me how the research and theory translates into their practice. So I think that sometimes I miss that step a little. I don't know how much the doctor would do it anyway, but it's almost like it handicaps you to know what certain words mean or to know what range of side effects they might talk about. It almost discourages them because you know so much. It doesn't make me feel bad it just sometimes would make life easier if they would explain a little bit more based on their experience rather than on what I have read the night before.