What do people want from pain management?

The short answer is often “take my pain away” – and we’d be foolish to ignore the impact of pain intensity on distress and disability. At the same time there’s more than enough research showing that if treatment only emphasises pain intensity (1) it may not be achievable for many, especially if we take into account the small effect sizes on pain intensity from exercise, medications and psychological therapies; and (2) even if pain is reduced, it may not translate into improvements in daily life.

The slightly more complex answer lies behind the desire to “take my pain away.” We need to be less superficial in our responses to this simple answer – and take a hard look at what people believe pain represents to them, and what they want to be able to do if pain is reduced.

A paper in the current issue of Pain piqued my interest as the authors explored what people with ongoing pain chose as treatments when given the choice. The paper itself is a systematic review of research papers using discrete choice experiments to determine preferences of people with pain when deciding on treatment.

Discrete choice experiments assume that treatments can be described by their important features, such as where therapy is administered, how often, the target outcome, adverse effects and so on. The approach also assumes that people make choices based on their personal weighting or the value they place on those features. As the experiment progresses, participants are asked to weight each attribute and choose their preferences as they gradually narrow the number of choices. (This open access paper outlines DCE in health in a little more detail – click, or you can take a look at this YouTube video summarising DCE – click).

Now there are some issues I have about this approach, because it also assumes that people make logical choices, that they have freedom to choose independently of other influences (like medico-legal requirements or cultural factors), and it also assumes that people make decisions in the same way that economic modeling finds – and I’m not so sure of that! Having said this, the methodology does shed some light on what people might value provided these assumptions hold true.

Following a systematic search of the databases, the authors identified 51 studies with a total of 4065 participants included, and were published between 2004 and 2021. Most of the studies looked at low back pain and/or osteoarthritis (high prevalence = lots of participants = easy to access). When analysing the attributes participants were asked to choose from, the authors identified the following (not all listed):

• Capacity to realise daily life activities – walking, domestic activities, social activities, activities of daily living, difficulties doing daily tasks etc
• Risk of adverse events – side effects, cardiovascular events, upper gastrointestinal problems etc
• Effectiveness on pain reduction – maximum pain intensity, improvement in pain, pain intensity, reduction in pain etc
• Out of pocket costs – direct payment, premium reduction, cost etc
• Treatment frequency – schedule, frequency, time
• Onset of treatment efficacy – waiting time for effect, time before able to exercise
• Design – individual, group, supervised
• Travel time
• Relapse risk
• Duration of effectiveness

What did they find?

Unsurprisingly, they identified that reduced pain was highly desired, and again, unsurprisingly, they found that the risk of adverse events was pretty darned important. What might be surprising is the capacity to realise daily life activities was the third most frequently rated attribute! In other words, while pain reduction and not having harmful effects was important, the capacity to do what matters is absolutely crucial!

Something I found rather interesting, though, is located deep in the manuscript: neither psychological interventions nor manual therapy have been investigated with this methodology. Now that is odd. And something that sorely needs to be examined because, at least in New Zealand, ‘psychology’ for pain is (almost) obligatory for pain programmes, at least those provided under the auspices of our national compensation organisation. What this means is, we don’t know whether people would choose psychological approaches over other forms of treatment for pain… and isn’t it time we did?

The authors point out that IMMPACT (Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials) recommends six core outcomes when evaluating the effectiveness of treatments for chronic pain. These are pain, physical function, emotional functioning, participant ratings of global improvement and satisfaction with treatment, adverse events, and participant disposition. Interestingly, there’s no specific mention of enhanced capacity to do daily life – it’s assumed, I suppose, that improved physical and emotional functioning translate to improved daily life, but they’re not a direct equivalent (it’s an assumption, right?). Given the differences found between what people do in a treatment setting, vs what they do do in their own life contexts, maybe this is something we should pay far more attention to.

I also note that the attributes don’t include in the need to adopt lifelong changes in routines, choices, activities, participation. Things like exercise, for example, along with medications, often need to be carried out over long periods of time – years, even. And research doesn’t manage to follow people over long periods because it’s very expensive and people drop out. And yet – this is exactly what people with pain must do.

Sensitively, the authors also point out that people at different life ages and stages may make different choices. If I’m nearing the end of my life, I might be more willing to ‘take the risk’ of an adverse event over the need to make long-lasting changes to my daily routine – the quick fix beckons! Concurrently, I’m curious that something clinicians consistently complain about: the desire people have for ‘quick fixes’ or immediate results ranked relatively low on the frequency table – at 1/3 of the ranking frequency. It’s the hope that treatment will enable people to do what matters in their life that seems so important! Who would have guessed…

Now my question is: do currently popular treatments (at least in New Zealand) like exercise and ‘psychological therapies’ have a useful impact on what people with pain rate so highly? Do they actually translate into enhanced capacity to engage in what matters to individuals? If they do – how is this measured? Does a ‘disability’ measure capture what’s important? Does a ‘quality of life’ measure do that well? When I value being able to do some things that really matter to me, but don’t matter to my partner or my next-door-neighbour, are we measuring these individual differences? And in what contexts? I might be happy to compromise on my ability to walk quickly over rough ground in the weekend, but what about my willingness to compromise on my walking at work? How about my ability to sit? What if I’m OK sitting with a soft cushion under my butt at home, but can’t carry that thing around with me to work or the movies or the restaurant or church?

Daily life activities are THE area of expertise of occupational therapists. If being able to do daily life is what people want, why oh why are so few occupational therapists included in pain programmes – even a tertiary level provider here in my home city? Come on, let’s get real about what occupational therapists know about! (end of rant!).

Zhu, M., Dong, D., Lo, H. H., Wong, S. Y., Mo, P. K., & Sit, R. W. (2022). Patient preferences in the treatment of chronic musculoskeletal pain: a systematic review of discrete choice experiments. Pain. 164(4). 675-689. https://doi.org/10.1097/j.pain.0000000000002775