It seems obvious, doesn’t it, that if there is a good understanding of the mechanism of a painful disease, some effective ways to treat it, and it’s an ‘acceptable’ disease to have (unlike some mental health disorders) – then people with the disease should really have great pain relief…or is it?
This study by Fitzcharles, DaCosta, Ware and Shir really grabbed my attention because it made a couple of points I hadn’t considered – firstly, that many people with chronic conditions that have effective treatments continue to have high levels of pain (but often don’t get to see a pain management service, even though they are being treated in a specialist rheumatology clinic), and secondly, that there are many differing reasons for people’s reluctance to take medication for pain relief, but often it’s the only option offered.
I won’t review the whole paper here, you’ll need to read the original (it’s worth it, because it has some good references and explores some interesting issues), but I do want to reflect on a couple of things that were identified regarding pain, patient and clinician attitudes, and rheumatoid arthritis.
OK, here’s how the study was carried out
Briefly, the methodology was to interview, using a standardised interview conducted by a nurse clinician, a total of 60 patients who were sucessively recruited over a six month period, and provided they could understand the questions, were 18 years and older, and had a definite diagnosis of rheumatoid arthritis (RA).
Several standard assessments were used as well as the interview, these were:
- Health Assessment Questionnaire (HAQ), and measure of functional status
- Preceding week pain intensity (VAS and four-point likert scale)
- McGill Pain Questionnaire
- Pattern of pain, including night pain, distress (as recorded on a five point likert scale), interference of pain (on a four point likert scale), as well as expectations about the disease, beliefs that pain may be relieved, beliefs about the degree to which the clinicians as well as family and friends understood their pain experience, and satisfaction with pain management.
Each participant was also asked to identify barriers to pain control by indicating from a list of six reasons plus an additional open-ended question.
The barriers identified were:
- fear of side effects of medications
- fear of drug addiction
- fear of drug interactios
- fear of masking the disease
- aversion to using many pills
What did they find out?
I won’t go through the statistical methods, nor all the results, but cut to the chase – most of the participants were using DMARDs, corticosteroids, and codeine. Most had RA for around 14 years (+ or – 10.7 years), and most were aged around 57 + or – 13 years.
66% had pain at night, with 23% reporting pain more than once at night.
87% expected that they would have ‘some’ or ‘much’ pain, while only 13% thought they would only have no or slight pain.
85% thought their pain could be relieved, but as I said before, 65% thought their pain was managed fine. 47% wanted better pain relief – even if they had been happy with their current regime.
Why are so many of these people reporting quite high pain intensity, but not actually asking for or receiving more medication? More to the point, why, in this study, was medication thought to be the only way to manage pain?
Well, sadly I don’t know why pharmacological means for managing with pain was the only option explored, but I can report the reasons these patients gave for being somewhat reluctant to obtain medication.
Firstly, the average number of barriers given were 2.6 = or – 1.5, with over 50% reporting 3 or more barriers.
Most of the people reported concerns about side effects (80%), taking too many pills (63%), concerns about drug interactions (57%), worries about addiction (35%) and concerns that treatments might mask the disease (27%). The more barriers identified, the higher the pain intensity reported – and interestingly there was a strong relationship between pain intensity and concern about taking too many pills.
What does this mean?
I’ll go through some of the thoughts of the authors of this study first, then make some comments of my own. By the way, there are some limitations to this study worth thinking about – the barriers were elicited during a face to face interview, and the interview was carried out by a member of the staff of this facility. There are ‘demand characteristics’ when someone who works in a centre asks if there are barriers to taking medications, or if pain relief is adequate. There was a pre-determined list of barriers given, and although an open-ended question was also asked, simply by providing a list some of the variety of reasons may be lost. That aside, it’s nice to see a study looking at what the patients believe rather than assuming the reasons behind decisions patients make.
The authors identified that these patients were receiving fairly standard treatment for their RA, and had moderate control of the disease, so were representative of people who receive specialst care for their RA. Their MPQ scores were around the same level as those in a previous study conducted by Burckhardt (1992).
Although RA pain intensity fluctuates during the course of the disease, the basic expectation of people is that it is painful – so many people would expect that they ‘should’ have pain. The authors suggest that perhaps people are more concerned about the deformities arising from the disorder, and perhaps the fatigue and low mood and even the functional limitations from mechanical joint changes, than pain reduction. They also suggest that perhaps the clinicians may pay more attention to managing the disease rather than the pain of the disease. They then go on to suggest that it is timely to consider the concept of ‘barriers to pain relief’ to understand why patients are reluctant to pursue pharmacologic management.
I think this latter concept is really important. People with RA, or any painful condition, have thoughts and beliefs about using a variety of ways to cope with pain. Often they are seeking a simple solution such as a pill – but as we know, there are good things and not so good things about taking medications. (Actually, there a good things and not so good things about all the ways we have to cope with pain!) Until we take the time to explore the person’s own thoughts and reasons for remaining ambivalent, we won’t have an opportunity to invite them to consider other options.
Better information about each of the barriers these people identified might help them feel much more comfortable with making a choice to seek pharmacologic approaches. At the same time, it’s important that we recognise that pain reduction through pharmacology is not the only way to manage pain.
I’m disappointed that nonpharmacologic ways of coping were not explored in this study. Here is a group of people, over half of whom were reporting moderate or greater levels of pain, and around 85% who thought their pain could be better managed, but who didn’t want to take medication because of concerns about this as a strategy.
While they were living their life, coping with everyday activities with quite a lot of distress and loss of function – some of the most effective ways of coping with pain in order to have a good quality of life were not explored.
Is this good disease management? Maybe it’s good disease management – but these are people with a disease!
Has anyone checked with these people as to whether they do believe they ‘should’ have pain? Are patients really more concerned about deformity and fatigue than pain relief? Did anyone ask them? Isn’t there an occupational therapist, nurse, social worker, physiotherapist, psychologist – or even a doctor – with the time to explore the person behind the inflammation?
I guess my frustration is that chronic illnesses are still managed often as though they are like a broken leg – you fix the tissue dysfunction, the person goes away back to their usual life. But chronic means ongoing – that means this person isn’t going to ‘just get better’, they need to make adjustments in many areas of their life – and they have the right to be offered effective life management as well as effective disease management. What do you think?
M FITZCHARLES, D DACOSTA, M WARE, Y SHIR (2008). Patient Barriers to Pain Management May Contribute to Poor Pain Control in Rheumatoid Arthritis The Journal of Pain DOI: 10.1016/j.jpain.2008.09.012
I’m glad you asked this one!
I have RA. Was dx’d two years ago, had symptoms for several years before that.
I am taking a biologic, two DMARDS, a variety of other stuff to go with, occasionally steroids (although last time didn’t go as well). I haven’t gotten satisfactory results per my rheumatologist. (still have swelling and symptoms).
But she has never asked about pain other than “does this hurt?” Never asked about activities of daily living.
Never given suggestions for pain relief other than med changes. Never suggested OT or PT. Her focus is on how many joints are affected and whether to change meds again. She seems a little frustraited that I haven’t tolerated everything or improved all that much.
My regular Dr. has asked about pain when I was in sick, and prescribed pain med (codiene) to use as needed. He emphasized that for a person in my condition addiction wasn’t a likely outcome. He seemed to expect that I’d have pain and had concern for it and me. When asked about assistive devices so I could hold things in my hands better, he referred me to PT, who referred me to OT. (OT hasn’t called me back yet)
Yes, I am in pain every day. And at night. It can take awhile to find a position to sleep in. I have figured out for me that heat often helps. One spot (knee with bursitus) likes cold. That I need to have periods of rest and periods of movement. If I’m hurting, I try what has helped, I be patient. Forever is a long time. I don’t think about duration much—neither how long it has been or how long it may be. I don’t know if I expect to hurt, but I do have to come to acceptance and go on with life. I can’t focus on trying to find something to stop the pain to the exclusion of living life today.
kmom, thanks so much for sharing your experience of RA, and I’m sorry to hear your specialist hasn’t really gone beyond a biomedical viewpoint. There are lots of people like you, so it seems, and lots of specialists who have a similarly biomedical approach. I’m glad you’ve found some other health providers who do have a broader viewpoint – and have got some help!
You may like to use the book ‘The Pain Survival Guide’ by Dennis Turk and Frits Winter (APA, Washington, 2006) for some other non-pharmacologic ways of living. You’re so right, you can’t focus on trying to find something to stop the pain – life continues and you want to be part of it!
I think that the evidence in most painful conditions, whether they are an identified disease, or a nonspecific but persistent pain, is to maintain your activity level, use positive coping such as planning your activities, allowing sufficient time for rest and activity, communicating effectively with others, and maintaining your own positive thoughts, along with living in line with your values. That way you have a LIFE not live with a disease!