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 by Bronywn Thompson, MSc, DipOT
Pain is a hallmark of rheumatoid arthritis (RA); pain is one of the most common initial presenting concerns and influences functional status, quality of life, and general well-being. Thus, it is surprising to find that although pain is included in many of the assessment measures for RA it may not be actually managed well.
One study by a group of researchers in Canada found that many people with RA have considerable pain, even at night, despite specialist disease management (Fitzcharles, DaCosta, Ware, and Shir, 2009).
The study focused on 60 participants seen in a specialist-managed rheumatology clinic who were interviewed by a nurse practitioner. Part of the study was to examine their pain experience, report on patient satisfaction with pain control, and explore barriers that may influence optimal pain management.
Most of the participants had been diagnosed for around 14 years (+/- 10.7 years), and most were approximately 57 years old (+/- 13 years). All were patients of the rheumatology clinic and were receiving effective disease management via pharmacological methods. However, when asked about their pain, the results were distressing.
- 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 65% thought their pain was managed well.
- 47% wanted better pain relief - even if they had been happy with their current regime.
- 66% had pain at night, with 23% reporting pain more than once at night.
That’s a lot of pain in a reasonably common disease. Why were so many of these people reporting high pain intensity while their underlying disease is well treated?
On average, each patient reported two-or-three barriers to getting good pharmacological pain relief. Their concerns included thinking things like, ‘I’m taking too many pills already;’ ‘I worry about side effects;’ ‘I’m worried about interactions;’ ‘I have worries about addiction;’ and ‘I’m worried about masking the disease.’
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.
The authors suggest that perhaps people are more concerned about deformities arising from the disorder, and dealing with fatigue, low mood, and even functional limitations from mechanical joint changes, rather than in asking about pain reduction. They also comment that perhaps the clinicians may pay more attention to managing the disease rather than the pain of the disease.
Although RA pain intensity fluctuates during the course of the disease, the basic expectation of people is that it is painful – as a result, the authors state many people with RA expect that they 'should' have pain.
I think it is very important to understand the patients’ perspective here. People with chronic pain have thoughts and beliefs about ways to cope with pain. Often they look for a simple solution, such as a pill - but in this study it is clear that people have a good deal of ambivalence about taking medications. Unless we take the time to explore the person's own thoughts and reasons for remaining in two minds, we won't have an opportunity to invite them to consider other options.
It’s a shame that better information addressing the concerns these people had about medication isn’t readily available. It might help people who have a disease that is already disabling feel much more comfortable about asking for pharmacologic help for pain.
At the same time, it's important that we recognize that pain reduction through pharmacology is not the only way to manage pain. I'm disappointed that non-pharmacologic 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. Around 85% of the respondents thought their pain could be better managed, but didn't want to take medication because of various concerns. Yet, they weren’t offered some effective, non-pharmacologic approaches, such as cognitive behavioral therapy, relaxation training, or exercise.
Is this good health management? Maybe it is good disease management - but these are people who just happen to have a disease!
After reviewing this study, I have several questions that I hope we, as healthcare professionals, begin to include in our assessments of people with chronic pain. They are:
- Do we check with patients about their beliefs about their pain?
- Are patients really more concerned about deformity and fatigue than pain relief?
- Do patients really believe they ‘have’ to have pain just because they have RA (or any chronic disease?)
- Did anyone ask them about their thoughts on the disease and its management?
- Are other disciplines being consulted to explore the person behind the disease?
I’m frustrated that, often, chronic illnesses are still managed as though they are like a broken leg: you fix the tissue and the people go back to life as normal. But chronic means ongoing-- that means these individuals aren’t going to 'just get better.' They need to make many adjustments on how life continues with this disease. Thus, they have the right to be offered effective life management as well as effective disease management. What do you think?
Reference:
Weiss SC, Emanuel LL, Fairclough DL, Emanuel EJ: Understanding the experience of pain in terminally ill patients. Lancet 357:1311-1315, 2001
About the Author:
Bronwyn Thompson originally trained as an occupational therapist. She later completed her MSc in Psychology, and is currently enrolled as a part-time PhD student in the Department of Health Sciences at Canterbury University.
She has worked in pain management for 18 years, with a main focus on pain management at work. Her main interest areas include the factors that complicate return to work, pain and anxiety, exposure therapy for pain-related anxiety and avoidance, importance and confidence in motivation for self management, and resilience. Bronwyn’s aims for pain management are to help people reduce the functional impact of pain and to improve their engagement in living life to the fullest.
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