Patient-determined outcomes: If you can’t take my pain away, then at least let me do more
If I had a dollar for every time that I’ve asked someone what they would like from pain management and they’ve answered ‘take my pain away’ – well I wouldn’t be writing this blog early in the morning before work!

The findings from this piece of research by Thorne and Morley (2009) suggests that people think an acceptable reduction of pain should be about 45 – 75% – but most pain treatments achieve about 30 – 50%.  Part of the process of receiving treatment seems to be helping people become more accepting of a higher level of pain but an improved level of function.

A couple of points from this paper really interested me – one was the acknowledgement that most outcome measures in research are determined by the researchers themselves, not by the people who are being treated. As a result, there are a lot of measures of pain reduction, distress reduction, mood improvement, reduced catastrophising, increased range of movement and so on – but not so much about increased engagement in doing important activities.

Another point that struck me was the reiteration of the need to include multiple outcome measures – something that is often omitted from purely biomedical intervention outcome measurement. Sadly, some medical practitioners don’t understand that humans are active processors of information, and that even if their pain is reduced, they may continue to be affected by the whole event.

One colleague told me just a couple of days ago ‘I am talking about taking the pain away all together so that the patients original status quo is returned…If they had disability,fear avoidance or anything else prior to the onset of their nociception, then they should have been directed towards psychological help before their pain started.’ That’s almost laughable in its ignorance of the biopsychosocial model, but sadly means that the patients who are treated by this doctor are unlikely to be provided with an effective approach to reducing disability, even if their pain is alleviated somewhat.

Back to these papers – one paper and one editorial.

Vowles and Robinson point out that although people want a greater level of pain reduction than they typically receive, most people are very satisfied with their treatment.  Maybe this points to those mysterious ‘nonspecific’ factors that influence treatment (good listening skills, taking someone seriously, being empathic and explaining things well), or maybe it is the effect that undergoing treatment provides – helping people become more accepting of their pain.

Thorne and Morley asked the question ‘what outcomes are most valued by people undergoing treatment for chronic pain?‘  A valuable question indeed.

Their findings were that ‘the magnitude of change required by the participants was greater than a 50% reduction on the scales measuring pain severity, pain impact and pain interference. It was marginally less than that with respect to activity.’ I can’t think of many treatments for pain reduction that can achieve this level of pain reduction, especially when pain has persisted, and even in the absence of significant psychosocial vulnerability factors.  Mind you, the effect of participating in cognitive behavioural programmes is a lot lower than that required by participants too!  We don’t have it sorted.

The interesting point made by the authors is that if there is a large discrepancy between what patients want and what they actually can obtain, much of the work we may need to attend to in treatment ‘might be directed to managing the motivational and emotional consequences inherent in such a discrepancy between acceptable and achievable
They add ‘patients may ‘recalibrate’ their criteria for success after exposure to treatment’, and demonstrated that people who were asked to retrospectively assess their improvement expectations after treatment had started estimated lower levels would be required for them to be satisfied.

I can’t really express my views about outcome measurement any more eloquently than these authors do in their final paragraph, quoting Turner and Turk (2008)

‘patients and health care providers need to know the probability
that a specific treatment in a specific setting will improve a given
patient’s function to a clinically meaningful extent’. We would
add to this observation and suggest that patients need to be able
to articulate what would be an acceptable outcome for them and
health care providers need to take this into account and to be able
to map this onto the known effectiveness of the treatment. The
combination of methodologies to determine clinically significant
outcomes and map patient-defined outcomes onto them would appear
to be an important development in furthering the development
of health care in which both health care professionals’ and
patients’ voices are heard.

I wonder whether this is something large purchasing bodies could consider when they start dictating the outcomes they want monitored – asking the patients? What an idea!

Thorne, F., & Morley, S. (2009). Prospective judgments of acceptable outcomes for pain, interference and activity: Patient-determined outcome criteria Pain, 144 (3), 262-269 DOI: 10.1016/j.pain.2009.04.004

Turner JA, Turk DC. The significance of clinical significance. Pain

Vowles, K., & Robinson, M. (2009). Progressing towards acceptable treatment outcomes Pain, 144 (3), 228-229 DOI: 10.1016/j.pain.2009.05.008

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