Do patients take their medications?

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I don’t often write about medications, not because I don’t believe in their use but because that’s not my focus.  However, just to put the record straight: medications and medical management of chronic pain has a place in the model of pain management I use.  After all, it is the ‘bio-psychosocial’ model, not the psychosocial one!

I am interested in how often people follow the advice of their health providers, because if my aim is for people to manage their pain by themselves I really would like them to go away having tried something and knowing whether it is helpful or not.  A treatment can’t be useful if the person doesn’t actually give it a good go.

So something I usually ask about is how closely a person follows the advice of a doctor with regard to taking medications.  Of course that’s presuming the doctor has prescribed a medication with full knowledge of the most effective way to use it, and recognising how to minimise the effect of side effects!  Some doctors don’t always understand how debilitating side effects like drowsiness, dry mouth, constipation and increased perspiration can be.

Often I find people tell me ‘I tried [X] drug but it didn’t work’, so I ask how they took it and they’ll say something like ‘Well I took it for a couple of days’, or ‘I took it when my pain was really bad’, or ‘I took it only when I thought I needed it’.  Sometimes this difficulty comes from a basic distrust of medications – ‘all these chemicals I’m putting in my body’ (tobacco and marijuana don’t count as chemicals…!), and sometimes it’s because of fears of addiction and tolerance; other times it’s concern from others ‘my partner doesn’t think I’m depressed so he said I shouldn’t take [X]’.

But sometimes it’s something even more basic than this – have you ever read the labels on ‘how to take this medication’?

Given that so many people attending pain management have poor reading skills, one of the problems getting people to take medications as prescribed could just be about not understanding the instructions.  With many people being prescribed quite a battery of drugs, up to four or more different ones all to be taken at different times, some with food, some on an empty stomach, some with water, some never to be take with grapefruit juice – well, you get the picture.

A quick moan here – I’m often surprised and distressed that individuals I see have been prescribed medications that they don’t like or don’t take according to the instructions and they have never been seen by their doctor to establish whether the medications are working!  So I hear that people are taking, on an ‘as needed’ basis, medications like amitriptyline or nortriptyline – just every now and then.  Or others are taking anti-inflammatory meds – with no effect.  Surely part of good health care is to review whether your intervention has had an effect of some sort?

The paper I found yesterday by Broekmans and colleagues, looks at the adherence rates of people attending a multidisciplinary pain management centre, and it’s unusual for several reasons: as they identify, there are very few studies on medication adherence in non-cancer pain; the studies that have been carried out often have methodological problems (what is adherence anyway? are we looking for over-use, under-use or abuse? how is adherence measured?).  Some good points – one person I saw recently told me of taking codeine 60 mg ‘between 26 – 36 at a time’…and wondering why his GP didn’t want to prescribe him any more!  That’s over-use.  Another said she had been prescribed a long-acting opioid, but took it only when she felt like she needed it – that’s under-use.  While yes, there are a few who we find are abusing medications to feed an addiction (probably the first example I gave).

What did this study find?

743 patients were seen in the Centre, but over 380 didn’t meet this study’s inclusion criteria, so after those who didn’t want to participate were also excluded the study only had 281 participants.  So it’s probably a little under-powered, but that’s the reality of working with ‘live’ patients in a real clinical setting.

Their findings indicated that only just over half of these participants adhered to the medication regime as prescribed.  That’s right: only half!  14% of the remainder were over-using their medications, and 32% were under-using their medications, and a very small percentage wavered between the two.

Wow! That’s a large group of people not getting the benefit of the medications they’ve been prescribed!

Some of the factors that this study identified relevant to adherence were age and health insurance status.  It’s a shame health literacy wasn’t studied, but some of the following were – the number of pills that needed to be taken, the number of prescribed analgesics, the time since the last medication changes were made, smoking behaviour, self-medication (more in under-users than over-users – interesting that).

The drugs that were over-used – opioids.  How did you guess?  At the same time, opioids were also the most under-used – again, did you guess that?

While the patterns of over- and under-use weren’t straightforward, things like pain intensity or diagnosis weren’t associated with how closely people followed prescriptions.  That’s another piece of evidence supporting the lack of association between pain intensity and treatment-seeking behaviour.  Although it wasn’t studied in this paper, I’m guessing that distress and external locus of control might be more associated with over-use of medications, or using medications only ‘as required’.

Medications can be an effective part of a pain management plan – but they can’t be effective if people don’t take them according to the way they’re prescribed.  Or at least the chances of them being effective are much less.  And what’s really concerning is that so many people didn’t follow the prescribing advice and without close monitoring and actually asking the question about medication adherence we would be none the wiser.

A psychosocial assessment needs to include questions about how a person is using medication. If it’s only used when the person is experiencing high pain intensity and associated distress, the effect may be more about a learned response to ‘taking control’ or reducing distress than any pharmacological effect.  And it’s pretty important to know about why the person is taking medications differently from the way they’re prescribed.  Maybe it’s because of side effects that are just intolerable.  Maybe it’s because there are too many pills to keep track of.  Maybe it’s because of family pressure or beliefs.  Maybe it’s fear that by taking medications they may be doing harm to their organs long-term.  Maybe it’s also about fear that by using medications they are ‘masking the pain but the damage is still going on’.

I’m inspired to conduct a similar study in our own Centre – I’m not sure that our results would be very different from these.  But we won’t know if we don’t ask.  And if we ask – it might just help the people we’re seeing.  It’s not just a medical or nursing question: it’s a behaviour and is based on beliefs, attitudes and biases as well as learning.  All good things that all health care providers working in chronic pain management need to know about.  I simply wonder why so few of the psychological reports (written by?) include this very important information.

Oh BTW – I’m expecting a LOT of spam from this post – they just all come out of the woodwork with those magic words ‘opioids’, ‘medications’, ‘drugs’, ‘pills’!! You wait and see…!

Broekmans S, Dobbels F, Milisen K, Morlion B, & Vanderschueren S (2010). Pharmacologic pain treatment in a multidisciplinary pain center: do patients adhere to the prescription of the physician? The Clinical journal of pain, 26 (2), 81-6 PMID: 20090432

When patients set the goals of therapy…

If you’ve been following my blog over the past week or so, you’ll see I’ve been discussion goal setting as part of pain management rehabilitation.  I’ve looked at the things patients may ask for, and the difference between these goals and the goals that clinicians may need to set directly related to the treatment aims. I’ve also looked at the place of goals in life generally, the subskills used to develop and achieve goals, and what happens to people when they can’t achieve the goals they set. I’ve also looked at using Goal Attainment Scaling as a form of outcome measurement. Today I want to look at a study where the effect of patients being involved in goal-setting was measured. Unfortunately, it’s not a study within the chronic pain setting, instead it’s about goal-setting within an inpatient neurological rehabilitation unit. There are clear differences between the model this unit uses compared with most chronic pain management settings – but there are also things we can learn, so here goes!

This study was carried out in The Neurological Rehabilitation Unit at the National Hospital for Neurology and Neurosurgery, London, UK, and involved 200 in-patients, half of whom were involved in ‘normal practice’ and the other half were involved in a programme where increased participation in goal-setting was encouraged.  The patients had a range of neurological conditions including stroke, multiple sclerosis, spinal cord lesions, and a variety of other less common conditions like peripheral nerve disease and central nervous system tumours.

This Unit has a care pathway, which is a set of interlinked goals relating to five main dimensions:

(1) health maintenance,

(2) cognitive functioning,

(3) personal activities of daily living,

(4) participation and

(5) communication.


All admissions to the unit over an 18 month period were included in the study, except if they had limited ability to communicate in English.  This meant that a total of five patients were excluded.    A ‘repetitive block design’ was used to determine the treatment protocol used, with each block lasting 3 months.

‘At the onset of each phase all staff (physiotherapists, occupational therapists, speech and language therapists, nurses and doctors) working on the neurological rehabilitation unit attended a training session on either the ‘‘usual practice’’ (phase A) or the ‘‘increased participation’’ (phase B) approach which was to be used.’


Four measures were used: Patients’ beliefs about their involvement rated on a four point scale; Goal relevance was measured as a global rating using a 10 cm visual analogue scale, with the anchors being ‘not at all relevant’ and ‘highly relevant’; each goal was rated on a five point scale from (1) highly relevant to (5) of not relevance whatsoever; patients overall satisfaction was rated on a 10 cm visual analogue scale; the distribution of the goal components was recorded on the five care pathway dimensions , as were the outcome or end status of the goals, and reasons for non-completion of goals (variances) were collected for comparative purposes.  Three functional outcome measures were also taken on admission and discharge (unfortunately, not long-term outcomes) – Functional Independence Measure (FIM),  London Handicap Scale, and  General Health Questionnaire (GHQ-28).

The flowchart shows you the two pathways patients may follow, depending on the month they are admitted.


In the experimental group, patients are asked to complete a structured goal-setting workbook before admission, and attend clinical goal-setting meetings.  In the ‘treatment as usual’, goals are set by therapists without direct input from patients.


There were no significant differences between the two groups, except mean age for the ‘‘increased participation’’ group was 4 years younger than ‘treatment as usual’.

Patients correctly identified the origin of goals, depending on the group they were in, and they also identified that their goals were both more relevant, and that they were more satisfied if they were in the experimental group.

Different types of goals were set when participants increased their input to goal-setting.  Notably, people in the experimental group identified a greater number of ‘participation’ goals compared with the ‘treatment as usual’ group.  There were fewer overall goals set in the experimental group, but there was no difference between the number of goals achieved in each group.  Finally, there were no differences in the functional outcome measures between the groups at discharge.

So, what does this mean?

Well, one aspect that did differ between the groups was the degree of satisfaction with treatment – in pain management at least, there is some evidence that expectations that are well-met during treatment are associated with slightly better outcomes. It probably also meant (although this wasn’t directly studied), that adherence to treatment activities during treatment was probably a little higher.  Happier patients probably means happier staff!

It’s interesting that there was no data on the long-term adherence to treatment activities, nor on outcomes between the groups.  I’m inclined to think that people who believe their goals are more relevant to their real life would be more likely to carry on with the treatment activities and therefore the outcomes over time might be more durable.

The main difficulty with generalising from this example to other settings is about the methodology.  This isn’t a blinded RCT.  It would be really difficult to set up a full-blown RCT, but it is a limitation.  There could be systematic differences between the two groups that weren’t readily identifiable – or perhaps there were differences in the way the staff facilitated the processes.

Another difficulty is that this was an in-patient setting, while most pain management in New Zealand, anyway, is within an outpatient setting.  I’m not sure how much this would influence the processes, apart from probably a much closer team working environment in an in-patient setting compared with outpatient.

Patients experiencing chronic pain often report that they feel they are not listened to, and that their concerns are not addressed.  Perhaps by following a systematic process of setting goals, similar to this study, this concern could be addressed.

On the other hand, ACC asks for claimants to determine their ‘functional goals ‘.  As I mentioned when I first posted about goal-setting, lots of patients simply want their pain to be gone, and life to return to normal. It’s not easy to elicit clear goals from patients as many haven’t set goals routinely, and given the lack of direction and sense of disillusionment that many face as part of having chronic pain, perhaps we need to use a structured process to help people establish goal areas, then work through how they might achieve the goals – during both therapy and afterward.

This isn’t the last post from me on goal-setting.  I’m on the hunt to find some good material on which to base a process for developing good goal setting strategies.

What strikes me, though, is the real lack of good clinically-based research demonstrating the effect of goal-setting on patients, and to work out what works, and what doesn’t.  Even some nice descriptive studies would be worthwhile to explore the experiences of patients as they participate in goal-setting!  This is a challenge, folks!  Let’s do it!

R. C Holliday, S. Cano, J. A Freeman, E D. Playford (2007). Should patients participate in clinical decision making? An optimised balance block design controlled study of goal setting in a rehabilitation unit Journal of Neurology, Neurosurgery & Psychiatry, 78 (6), 576-580 DOI: 10.1136/jnnp.2006.102509

Health literacy: if you can’t read it, you don’t get it

For a long time I’ve been a fan of ‘plainspeak’ or eliminating gobbledegook.  I know my writing is often quite complex, but I try to write as if I’m talking directly to someone – and yes, I do use all those complicated words in real life!

But after working in pain management for a while certain themes keep coming up, and one of them is the large number of people who don’t read and write well.  I value the concept of multiple intelligences, and some people are simply ‘practical’ and hands-on, and don’t like books much – but to actually not be able to read and write well enough to understand common labels and warnings and instructions, that is an incredible handicap.

I have just been reading a paper by Don Nutbeam called ‘The evolving concept of health literacy’ in which he discusses the concept of poor health literacy as a risk factor for poor health status, and conversely, the idea that by improving health literacy it can become an asset to enable people to take control over their health and the factors that shape their health.

Poor health literacy is associated with lower socioeconomic status, reduced use of health resources and information, poorer adherence to treatments and higher drop-out rates.  It’s easy to see why both direct and indirect effects of not being able to make sense of written information might have an effect on health.

Nutbeam’s paper makes the point that decisions about health are made in a context, part of which is the ability of the individual to make their way through the health care system.  This system inevitably involves negotiating paperwork, being aware of pre-requisites for care, being able to clearly state what is needed – and to the right person. More than that, it’s being able to retain the complex information that a health care decision is based on, and maintain that working knowledge to understand why certain actions need to be taken at certain times.  It’s clearly not just about an individual being able to read – its about an interaction between health care systems and individuals, and it includes, according to Nutbeam, three critical points at which literacy directly influences health – access (who do I see? where do I go?), the interaction between the person and the provider (how does the provider ensure the person understands and retains the information?) and self-care (how does the person continue to take best care without directly drawing on the ‘system’).

The alternative view of health literacy as an asset suggests that by improving literacy, it becomes integral to empowering the person to carry out self care – and to receive appropriately tailored information so they can engage in activities that increase wellbeing.

That’s a big ask for a health care system that often does view health as ‘the absense of disease’.

What can you and I do?  Check with our patients whether they can read the information we provide – write simply in bullet point, avoid jargon, make sure patients have time to absorb information before making a decision, and in the end – listening, listening, listening.

D NUTBEAM (2008). The evolving concept of health literacy☆ Social Science & Medicine DOI: 10.1016/j.socscimed.2008.09.050

Two strikes and you’re out – referrals and readiness

I’m in a bit of a dilemma. As you know, health resources are scarce and it’s not easy to get an appointment for treatment of a chronic condition. There’s something to be said for making sure that our precious health care time isn’t wasted by people who would rather not be there.
On the other hand, there is also something to be said for people being in the right headspace, or in more technical terms, the right stage of readiness to engage in therapy. If the person is referred for treatment before they’re ready, it’s going to be difficult for them to engage – and they may very well do the resistance thing that we see so often ‘yes, but’, ‘OK but’ or not actually do what we’ve suggested they do to help manage their condition.

The discussion that has raised this in my mind happened on Monday. (more…)