The difficult balance between evidence-based healthcare … and person-centred self-management

For decades I’ve been an advocate for evidence-based healthcare because the alternative is ’eminence-based healthcare’ (for healthcare, read ‘medicine’ in the original!). Eminence-based healthcare is based on opinion and leverages power based on a hierarchy from within biomedicine (read this for more!). EBHC appealed because in clinical practice I heard the stories of people living with chronic pain who had experienced treatment after treatment of often invasive and typically unhelpful therapies, and EBHC offered a sifting mechanism to filter out the useless from the useful.

Where has EBHC led us? Well, we don’t use back belts or rest for low back pain like we did. And we know that movement/exercises can be helpful.

And then I get stuck.

When we look at exercise, the most widely touted therapy for chronic pain in New Zealand Accident Compensation Corporation pain programmes, we don’t have many clues as to which type of exercise is best for the various forms of pain. We know the effect sizes are dismal for both pain intensity and disability. We know many people just don’t do their exercises without being supervised. And we have no idea just how long people will carry on with exercise once they leave a formalised programme. Worse: we don’t know whether the exercises prescribed during a bout of pain will stand the test of time – because for most people with chronic pain, pain is just that, chronic. It’s chronic. Ongoing. It recurs. It flares up. And people live for decades with it. Are those exercise programmes wasted money?

In other words, EBHC studies have given us a few ‘what not to do’ moments, but are largely equivocal when it comes to how people with pain can live their own lives for the rest of their lives.

When I listen to people with pain and hear their stories of what they’ve been told and received for their pain management, the EBHC paradigm doesn’t seem to have gone very far. Many people have been taken first down the biomedical line of medications, imaging ‘for reassurance’, surgical opinion, and once those avenues don’t work, perhaps physiotherapy (at least, here in NZ). Not terribly evidence-based, given we’ve known that imaging for low back pain is not recommended and hasn’t been for decades (at least since 1997 and the NZ Low Back Pain Guidelines), while medications are a pretty mixed bag of side effects and limited pain reduction (Chaparro et al., 2012; Koes et al., 2018; Taylor et al., 2021).

In physiotherapy what’s offered? A combination of ‘corrective’ or ‘therapeutic’ exercises, maybe some hands on therapy, perhaps some coloured tape, probably some theraband or resistance gadget, education to explain pain, and… ? Goals get set, to be achieved, then…?*

Pretty devoid of, and distant from, daily life and lifespan needs. Not terribly meaningful. (No, goals are not inevitably meaningful, especially when they’re set within the first hour of therapy before the person has had a chance to consider what really matters.)

You see, thinking very critically about exercise and especially the majority of RCTs, they’re shoddy. We often don’t know exactly what exercises were set (nor how they were decided on). We rarely know anything about the movement practice backgrounds of the person, and very little about how long they’re expected to maintain their exercise prescription – or whether they do. We don’t know about the person’s living situation, whether it’s safe and they have sufficient time to undertake their prescribed exercises. We don’t know whether those exercises affect the specific physiological processes we hope they do. And yet exercises are prescribed on the basis of these studies.

Attempts to investigate why people with pain don’t adhere to exercise prescriptions have found that lack of treatment impact; the relationship with the physiotherapist; the burden of actually doing exercise; and not always understanding why exercise might be a good thing – all influence long-term adherence (Dickson, et al., 2024). Vader and colleagues (2021) found that pain and fatigue get in the way of exercising; perceived risks of exercising; personal beliefs about exercise; competing demands in life; motivation; other health problems – and having adequate supports to do exercises.

In other words, life and personal views about exercise intrude on whether exercise is something people will do.

Exercise is one of many ways people self-manage their life with pain. Exercise gets prescribed in pain management and rehabilitation in part because it provides a vehicle for compliance. If a person doesn’t want to do the prescribed exercise programme, they’re pushing stuff up hill and likely to get labelled. It might surprise people to know that despite my abhorrence of The Gym and 3×10 reps, I love movement and it’s a critical part of my life with fibromyalgia. Exercise as defined and prescribed in much of clinical practice today, however, is over-hyped, used as a form of control over people receiving pain therapies, is often rigid and the problems people face with doing movement practices aren’t addressed. The relational and daily life needs and values of people with pain aren’t featured in RCTs, consequently they don’t get incorporated in clinical practice. Self-management is all about what people do to live their own lives alongside pain – if movement practices are a good thing, they need to be fit for purpose for life.

*What isn’t demonstrated in RCTs for exercise? Relationships between the person and their therapist. The bits that are HARD, often called ‘soft skills’, that don’t get fully developed in a module on communication (which is often about what the therapist should say), the parts that need support and a supportive relationship with someone who cares about the therapist’s development, and the parts that potentially lead the clinician into being flexible and OK with ambiguity and liminality.

Chaparro LE, Wiffen PJ, Moore RA, Gilron I. Combination pharmacotherapy for the treatment of neuropathic pain in adults. Cochrane Database of Systematic Reviews 2012, Issue 7. Art. No.: CD008943. DOI: 10.1002/14651858.CD008943.pub2.

Dickson, C., de Zoete, R. M. J., Berryman, C., Weinstein, P., Chen, K. K., & Rothmore, P. (2024). Patient-related barriers and enablers to the implementation of high-value physiotherapy for chronic pain: a systematic review. Pain Med, 25(2), 104-115. https://doi.org/10.1093/pm/pnad134

Ferro Moura Franco, K., Lenoir, D., Dos Santos Franco, Y. R., Jandre Reis, F. J., Nunes Cabral, C. M., & Meeus, M. (2021). Prescription of exercises for the treatment of chronic pain along the continuum of nociplastic pain: A systematic review with meta-analysis. Eur J Pain, 25(1), 51-70. https://doi.org/10.1002/ejp.1666

Koes, B. W., Backes, D., & Bindels, P. J. E. (2018). Pharmacotherapy for chronic non-specific low back pain: current and future options. Expert Opinion on Pharmacotherapy, 19(6), 537-545. https://doi.org/10.1080/14656566.2018.1454430

Sackett DL, Straus SE, Richardson WS, et al. Evidence-based medicine: how to practice and teach EBM . London: Churchill-Livingstone; 2000.

Taylor, S. S., Noor, N., Urits, I., Paladini, A., Sadhu, M. S., Gibb, C., Carlson, T., Myrcik, D., Varrassi, G., & Viswanath, O. (2021). Complex Regional Pain Syndrome: A Comprehensive Review. Pain Ther. https://doi.org/10.1007/s40122-021-00279-4

Vader, K., Doulas, T., Patel, R., & Miller, J. (2021). Experiences, barriers, and facilitators to participating in physical activity and exercise in adults living with chronic pain: a qualitative study. Disabil Rehabil, 43(13), 1829-1837. https://doi.org/10.1080/09638288.2019.1676834