CRPS at CPS = Posters (25.05.2018)
This week I had the pleasure of attending the 2018 scientific meeting of the Canadian Pain Society (CPS); their annual conference. The Twitter handle for the conference was #CanadianPain18, so if you’re on Twitter you can look it up there; there were also some posts on Instagram, with the same hashtag.
For this post, I’ll call it “CPS 2018” – just because it’s a bit easier to type! The CPS is the Canadian chapter – or branch – of the International Association for the Study of Pain (IASP), a worldwide organization of health professionals who study pain; its diagnosis, research, and treatment. The IASP has 90 national chapters, and about 7000 members who’re from over 130 different countries. See the links at the end of this post if you’d like more information about either of these 2 groups; anyone can join the CSP, including patients, but only health professionals can join the IASP.
And, to be clear, I attended CPS 2018 as a CRPS patient and not as a healthcare professional. You can read Patients as partners for more on that topic. This means that any information that I post about the conference is NOT medical information. If you need medical or healthcare advice, as always, contact your doctor, nurse, pharmacist, or other healthcare professional.
What was fantastic to me about this conference, as a CRPS patient, was that there was actually CRPS information there! Finally, I was able to go to a place (other than my own specialist physician’s office) where people know about this disease. And know more about it than I do!
There was a full ‘session’ on CRPS, as well as 2 ‘poster’ presentations. At medical conferences and scientific meetings, a ‘session’ is a set of presentations about a specific topic. At CPS 2018, each session was usually a set of 3 different presentations – over a 1.5 hour period – with short breaks before & after each session.
The 3 presentations are given by people from different healthcare centres or universities, so each session had a variety of information and viewpoints. I’ll post about the session on CRPS later, as it will be a much longer post; I’m exhausted now, at the end of CPS 2018!
So today I’ll write about the 2 ‘posters’ on CRPS at CPS 2018. A ‘poster’ at this type of conference – and at the annual meeting of the Canadian Bioethics Society (CBS) that I attended last year – is kind of like an infographic. A very large, very detailed infographic; about the size of a movie poster, turned on its side.
The idea is for the poster to give highlights of a research study or article from a medical/scientific/specialty journal. All the posters are put up on the walls or on stands during a conference, in a really large room where all the attendees can go during the coffee breaks and lunches.
Conference attendees can walk around and look at all these posters, and stop to read the ones that interest them. The person who prepared the poster is usually standing beside it, so folks stopping by can ask questions about their research project or article. A long time ago, before computers, these were done by hand; they’re now printed up in really large format, on glossy paper with colours & even photos or drawings.
The 2 posters on CRPS were put up on different days; there were so many posters at this meeting that they didn’t all fit into the room at the same time! This was good for me, though, because I was able to talk to each of the CRPS poster presenters. If both posters had been put up on the same day, I might not have had time for both conversations.
I asked for permission to take photos of each of these posters, to post them to Twitter and include them in a blog post. I tried to keep the photo quality good enough so that each one could be expanded – on a computer, smartphone or tablet – and read section-by-section. But it’s difficult to take pictures one-handed, because of my hand/arm CRPS, so bear with me if you find the photos somewhat fuzzy!
The 1st poster about CRPS was called “CRPS prognosis: a tertiary care pain clinic cohort 2 years after end of active treatment”(1). This sounds super-complicated, but it’s not! The 2 researchers wanted to know how CRPS patients were doing, about 2 years after they finished a specific kind of treatment.
The research team wanted to know about these 4 questions for these patients, 2 years after this treatment ended;
- If their ability to work had changed
- Whether or not they felt they’d recovered from CRPS
- If their pain level had changed
- If the ‘active range of motion’ (AROM) of their affected arm or leg had changed
So they called some of their former patients, and – if the patient agreed – asked them a series of questions. And they had the patients visit the clinic again, to measure the AROM of their affected arm or leg. That’s not so complicated, right?
The treatment these patients had (2 years earlier) is called “passive rehabilitation under intravenous (IV) regional anaesthetic” (the last 4 words were shortened to “IVRA” for this poster). This CRPS treatment has also been called a “Bier block” or “IV block” with physiotherapy. If you’ve been read this blog for a while, you’ll know that I had a couple of these treatments; Bier, not beer (16.07.2016).
So… what did the researchers find? First of all, let’s meet the patients! 49 patients agreed to be in this study; 74% women and 26% men, with an average age of about 56. Of these patients, 80% had developed CRPS after a trauma (such as a fracture, or accident), and the other 20% after a surgery.
And now, finally, for the conclusions, for what the research showed. On the good news side; most of the patients’ pain levels kept improving after the treatment ended, their AROM stayed the same 2 years after the treatment (the effect of the treatment hadn’t worn off), and the patients felt that their CRPS had improved overall. On the not-so-good side, 15% of these patients had become permanently unable to work – because of their CRPS.
What was most important to me was the last line of the poster: “Reference delay is negatively associated with self reported recovery”. What that means is that the longer it took for a patient to be sent for CRPS treatment (i.e. referred to a specialist), the worse they did – even 2 years after they’d finished the treatment. So this research again shows how important it is for this disease to be diagnosed quickly, so the patient can start treatment with as little delay as possible.
The 2nd poster on CRPS was about allodynia; that’s when a person with CRPS feels pain when their skin is touched; for example by fabric (such as clothing, sheets, and towels), by another person’s skin (a caress, cuddling), sometimes even by a breeze. The poster’s title was: “What happens to intimacy when it hurts to be touched? A mixed methods study of allodynia in persons with CRPS” (2).These 3 researchers looked at comments from 44 people with CRPS, who’d completed a questionnaire about their disease – in person or by telephone. The research team wanted to know how (or if) allodynia affected intimacy and relationships for these CRPS patients. 91% of the patients surveyed were women, 9% were men. 47% had CRPS in their arm, 44% in their leg, and 9% in both arm and leg.
The ages of these patients ranged from 15 to 81, with an average age of about 48. Most of these patients said that the allodynia had negatively impacted their intimacy and relationships with their partners. But many also said that they’d been able to adapt their “social roles and identities in the context of their relationships”.
At the end of this study, the researchers had a suggestion – for physicians and others working in healthcare who treat patients with CRPS. That suggestion is to talk about this aspect of allodynia with their patients. For them to “include discussions on the spectrum of relationships and intimacy as part of comprehensive management” of this disease.Both of these posters were really interesting, in different ways. Both involved going back and talking to patients who’d been treated for CRPS, to find out how they were doing. It was nice to see that type of follow-up happening for these patients.
And, from my perspective, it was really nice to have any posters at all about CRPS! I’m so used to this being a disease that no one knows about, that I really appreciated being able to talk to people who knew a lot about it, and were actively studying it – and how it affects patients’ lives.
(1) Guillaume Martel (medical student), and Anne Marie Pinard, MD, FRCP(C). CRPS prognosis: a tertiary care pain clinic cohort 2 years after end of active treatment. Poster 45, presented at the 39th Annual Scientific Meeting of the Canadian Pain Society (CPS). 25 May, 2018, Montréal, Canada.
(2) Tara Packham, OT, Reg PhD, Kaitlyn Wainio, MScOT, and Ming-Kin Wong, MScOT. What happens to intimacy when it hurts to be touched? A mixed methods study of allodynia in persons with CRPS. Poster 196, presented at the 39th Annual Scientific Meeting of the Canadian Pain Society (CPS). 26 May 2018, Montréal, Canada.