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What matters: patient-determined outcomes and clinician/researcher outcomes

Posted Jul 17 2011 3:30pm

It’s easy to forget, sometimes, that when we choose an outcome measure, we need to seriously consider who will use the measures in the end.  Of course, I am assuming that we’re all using outcome measures – we are, aren’t we?  If anyone isn’t, shame on you – how on earth will you establish whether what you’re doing is having an effect? And don’t come at me with “oh but I just ask them” because I don’t want to have to list all the response bias, demand characteristics, and lack of consistency problems again. kthx.

Anyway, where was I? That’s right, the end-user in outcome measures.  Over the past few years, interest has risen in identifying the range of outcome measures that can be/should be used in research of treatments for chronic pain.  The IMMPACT project has worked to identify measures that researchers and clinicians agree are important – and more recently used focus groups to identify domains that people with pain thought were important.  I’ve blogged about this before here.

People with pain thought seven out of 19 outcome domains: enjoyment of life, fatigue, emotional wellbeing, physical activities, staying asleep at night, weakness, and difficulty concentrating, were so important they rated them at least 8 out of 10 (where 10 = extremely important).  Notably, these are all “subjective”, in other words, these are aspects of wellbeing that can’t be measured directly.

Beale, Cella and Williams (2011) were curious to see how well these domains were measured in 60 randomised controlled trials of pain rehabilitation.  These studies were included in a recent Cochrane review of psychological therapies for managing chronic pain (Eccleston, Williams & Morely, 2009).

Mapping the outcome measures used in each trial against the domains above, they found that physical activities were assessed in 93.8% of the 60 trials (over 5800 participants) and emotional well being was measured in 83.1% of trials.  Otherwise, the measurement of domains that people with pain thought were important was pretty poor.

None of the trials measured these important areas: difficulty concentrating, difficulty remembering things, hobbies, planning activities, and sex life; while only a few measured these domains : enjoyment of life, fatigue, weakness, staying asleep, falling asleep, relationship with family and friends, and taking care of family members.

The two most important areas to patients, enjoyment of life and fatigue, were not measured, or not measured well.

This result doesn’t entirely surprise me.  The practice of routinely measuring outcomes is still not well-established without (usually) some external agency requiring it.  In NZ, it’s often our national injury compensation agency that requires outcome measurement – as a result, outcomes are often those that have meaning to that agency.  Things like ability to return to work, mood, physical disability, and some cognitive variables such as catastrophising and fear of movement are often required.

Many medical practitioners question the practice of measuring outcomes at all – one doctor I know said “why can’t we just ask them?”  Hence my little grumble earlier in this piece.  Others want to limit the number of questions and pick and choose individual statements from psychometrically validated measures, like a pick and mix bag of sweets.  And it’s been my experience that some managers are loathe to spend time and money on collecting outcome measures “unless they’re needed by ACC”.

Why include outcomes that matter to patients?

Well, mainly because it’s their wellbeing clinicians are supposed to have at heart, isn’t it? It’s also about developing a greater ongoing relationship or dialogue between the person with pain and their treatment team.  By developing and including patient-centred measures, it’s far easier to have that conversation with the person who has pain.  The person can actively decide whether the treatment is helping – and if the person understands what’s in it for them, adherence to treatment is likely to be improved.

Where does this leave us?

One conclusion the authors of this study came to was that we simply don’t have a good range of outcome measures to reflect the areas patients think are important.  Actually, given the quite limited number of studies identifying what patients do think is important, maybe we haven’t got a good handle on the range of areas first!

I suggest we need to spend a little time considering patient-centred outcomes.  Maybe this is in the form of more patient focus groups talking about what is important to them.  Maybe it’s about using patient-derived measures like Goal Attainment Scaling.  Maybe it’s about working harder to develop measures that tap into things like quality of life.

Beale, M., Cella, M., & de C. Williams, A. (2011). Comparing patients’ and clinician-researchers’ outcome choice for psychological treatment of chronic pain PAIN DOI: 10.1016/j.pain.2011.06.007

Eccleston C, Williams ACdeC, Morley S. Psychological therapies for the
management of chronic pain (excluding headache) in adults. Cochrane
Database Syst Rev 2009;2:CD007407.

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