The Cochrane Schizophrenia Group

Measuring the Outcomes of trials

on May 3, 2013

By Mark Fenton, CSzG Editor and Editor for Database of Uncertainties about the Effects of Treatments (DUETs)

The job I get paid to do is as Editor of a database about things we know we don’t know (UK DUETS – http://www.library.nhs.uk/duets/) and one of the fields in a UK DUETs entry is to record the outcomes which should be addressed if the uncertainty should be taken up for future research.

Smiley Face 5 Satisfaction Scale

Smiley Face 5 Satisfaction Scale (Photo credit: cathyinoz)

I think it might be fair to say that I have spent a lot of time in the past seven years thinking about outcomes that should be measured in all sorts of trials, not just trials for those with schizophrenia.

I’ve also looked at the results of a fair few surveys of patients, carers and clinicians, where participants have been asked to let us know what outcomes should be addressed in future research. What comes back from the surveys regularly does not tell us the answer to this question.  So…I’ve become adept at ‘constructing’ a list of outcomes that I am becoming convinced should be measured in all studies; universal outcomes almost.

My list begins with ‘change in symptoms’, followed by ‘adverse effects or complications’, ‘acceptability to patients’ and ‘health care cost’…

disorganized-schizophrenia-symptoms-01

disorganized-schizophrenia-symptoms-01 (Photo credit: Life Mental Health)

Now, the Schizophrenia Group have shown that over 150 ways have been used for measuring ‘change in symptoms’ for those with schizophrenia, albeit many of those ways of measuring symptoms have only been used the once, so why not use rating scales as a way of measuring ‘change’; and I’ve also been asked why not improvement in symptoms in my list. I choose change in symptoms as people get worse as well as better, or at times, there are no changes at all in symptoms. That’s also why I do not think using ‘cure’ is correct to state as an outcome, so that we are as aware we have the potential to do harm or at least have no impact on someone’s symptoms. Using ‘complication’ as well as adverse effects also takes into account the times when patients are denied the correct treatment as they are receiving something that does not work for them, or they are not given the correct treatment because they are involved in an experimental study. Using an named rating scale as an outcome partly would be fine if they all used the same rating scale, but researchers don’t, and then even if they do use the same scale, what does change or no change mean clinically?

Acceptability to the person taking the intervention is an important outcome, which I suspect most patients and clinicians battle with, but little is discussed; if the drug or therapy isn’t acceptable to the person taking it, they either stop taking the medication or turning up for the appointments.

Asking about health care costs goes against the grain for me, partly because it seems hardnosed when measured up against someone’s health, and we have a health care system where the risks and costs are met from central or pooled taxation here in the UK, so we should get the treatment irrespective of cost. However, I also know that there is a point where you have to decide is the price charged worth the outcomes.

Just a few thoughts on outcomes for all trials. I’d appreciate your views.

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One response to “Measuring the Outcomes of trials

  1. every time i want to learn something good, i access your website, because of the great structure and coherent ideas please keep providing such good information.

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