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

5 comments

  1. I’m going to jump in on this one. I am a nurse, and when I first was diagnoised with RA, I carefully took according to instructions what was prescribed for me. I had been told it could take months to help, so I settled in to being a good patient. Eventually more medications were added and changed. At one point I had two medicines that had to be taken alone, on an empty stomach, first thing in the morning. Well, I also have a problem with low blood sugar early in the morning. (low like 23, but still functioning sort of) So things became increasingly difficult and complex. And I really didn’t feel that much better. I decided that some of these had to go, and choose these two, and started to tell my Dr. what wasn’t working for me.
    My health didn’t miraculously improve, but it didn’t get worse either. And I felt better taking some charge of the situation!
    I do have tylenol with codine to take “as needed”. It is very hard to decide when that might be, so I rarely take it, and only at night since it makes me feel icky if I am awake.
    I am not the “good patient” that as a nurse, I’d expected to be, but I do tell my Dr. what I am or am not doing.
    The visit this next week, I am dreading because I am no longer able to afford my medicine or the co-pays for Dr. visits or lab tests that are reasonable to have. Got a notice that my insurance will cost $51 more a month starting next month too, and that is also impossible.
    So how do I be a compliant patient, and still one that isn’t a deadbeat?
    So, I know and understand why if my pain gets worse, but medical treatment isn’t free or easy.

    1. Hi kmom
      Thanks for jumping in – your experience isn’t uncommon given some of the things I hear from the people I work with. I think what this study highlights is that for many reasons people don’t follow the prescription – and so the outcomes that are obtained in research studies are not always the same as those achieved by ‘real people’ in ‘real’ settings. Another thing the study highlights is that unless clinicians ask the questions about how someone is taking their medications, they may never know that (a) the prescription may not suit (b) the person may not know how to take the meds and (c) that meds may need altering so that the person gets the best from them. I hate that term ‘compliance’ – it sounds like ‘do what I say and don’t argue’ – adhering to treatment at least makes it sound like someone has actually talked it through. I’m so sorry to hear that your insurance has gone up and the other costs are so high – we have a pretty good health system here in NZ, but it still costs.

  2. I think the thing that I hadn’t realised in others, till my experience was that in moving from absolute “compliance” to choosing what meds I’d take gave me a feeling of having some control and an improved sense of well-being. I began to “own” my illness instead of being along for the ride.
    The compromise for me was in telling my Dr. what I was doing and why. I realise that others simply don’t mention it.

    1. Telling your doctor helps to reaffirm that this is YOUR body and life, and then the power in that relationship remains much more equal. I too feel like my health problems are part of me, and so instead of allowing things to be done TO me I can make sure I’m in a place of strength to discuss options and make it clear that I’m the one deciding which option I take. That sense that you have control and it’s your responsibility and right to manage your life helps so much with wellbeing! Good on you – and it’s a far better life you live!

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