Editor’s note: The fourth North American Pain School (NAPS) took place June 23-28, 2019, in Montebello, Quebec, Canada. Six of the NAPS trainees were also selected to serve as PRF Correspondents, who provided firsthand reporting from the event, including interviews with six visiting faculty members and summaries of scientific sessions, along with coverage on social media.
At NAPS 2019, PRF Correspondent Catherine Paré, a PhD student at McGill University, Montreal, Canada, conducted a joint interview with NAPS visiting faculty member Robert Edwards, PhD, and NAPS patient partner Billie Jo Bogden. Bogden is co-founder of a chronic pain patient group called the Patients of Eastern Ontario Pain Lifestyle Education (PEOPLE) Centre in Ottawa, Canada. She is an advocate with a long history of living with pain including multiple sclerosis (MS), fibromyalgia, and complex regional pain syndrome (CRPS). She champions innovation in pain medicine, better education, and collaboration with academics, researchers, healthcare professionals, and community leaders. Meanwhile, Edwards is a psychologist at the Brigham and Women's Hospital Pain Management Center, Chestnut Hill, US, where his responsibilities include assessment and treatment of chronic pain patients. His clinical research focuses on the biobehavioral aspects of acute and chronic pain, including individual differences in pain responses and the neurobiological mechanisms by which psychosocial processes shape those differences. In addition, he is involved in several studies of the efficacy and effectiveness of non-pharmacologic treatments for chronic pain.
Here, Edwards and Bogden discuss their interest in pain research, the opioid crisis, the term “catastrophizing,” and much more. Below is an edited transcript of the lively conversation.
I’ll start with you, Rob. How did you get involved in pain research?
Robert Edwards (RE): I went into clinical psychology in graduate school because I was most interested in studying mind-body connections. It seemed that pain was a terrific place to do that, and part of the appeal is being part of a multi- or interdisciplinary team, where people of all different backgrounds―some in mind, some in body, some in both―come together. It’s hard to get that kind of collaborative interdisciplinary care in other settings.
Roger Fillingim, who was my grad school mentor and advisor, was a terrific model for a young grad student just starting out in the field. He’s probably still a terrific model!
Billie Jo, how did you get involved in pain advocacy and research?
Billie Jo Bogden (BJB): I started looking at pain research in an effort to understand my illness. I developed MS after having a very traumatic health experience, and none of the standard treatments for MS worked for me. I was trying to understand why my body was doing what it was doing. I was distraught, so I reached out in my time of need to many pain organizations, and I didn’t get one answer back until I contacted Pain BC. It was Maria Hudspith [the executive director of Pain BC] who got me into advocacy and the Chronic Pain Network [CPN]―an initiative connecting patients, national stakeholders, and researchers to coordinate top-quality research on chronic pain―and it was a fabulous experience. I was the co-chair of the CPN Patient-Oriented Research Committee, so I got the rare opportunity to meet each one of the researchers and receive a debrief on each one of the projects. It just blew my mind that all of this research was being done and patients didn’t know about it.
The other reason for doing this is that I have four children. I have genetically transmitted autoimmune illnesses, and there’s a pretty good chance that one of my children will develop, at some point, an autoimmune-type illness. I wanted them to have a better experience. So it’s about changing the system for the next generation.
Rob, you and my supervisor, Mick Sullivan, are two of the most prolific researchers in the area of pain catastrophizing. How do you think your clinical work influences this line of research?
RE: There is probably more separation than there should be between my own clinical practice and the research that I do. Some of that is unavoidable. For example, doing functional MRI scans on people to look at what brain networks might be involved in chronic pain will remain largely in the arena of research for financial reasons; we’re probably not going to start doing scans as part of clinical practice to target brain networks and reduce chronic pain anytime soon. But in other realms, it would be preferable to bridge the gap between what we write about in papers and what we talk about in our offices or clinics.
Most chronic pain conditions can occur via overlapping but unique individual pathways, meaning there are dozens and dozens of factors and processes that play into developing pain. There might be dozens of different ways to develop fibromyalgia—for example, being in a car accident and developing insomnia, which contribute to widespread hypersensitivity and pain, or having a series of really traumatic events. Some of those processes are psychological or psychosocial in nature, but we don’t do a great job merging the research discussion with the clinical discussion of those processes. For example, social isolation is a risk factor for developing a chronic, disabling medical condition, but if we’re not careful, it can sound like we are blaming people for being socially isolated and contributing to the development of their pain condition.
So when clinicians and researchers discuss with patients the role of psychosocial aspects of pain, the nature of the conversation can appear insensitive. Where does catastrophizing fit into this?
RE: Terms like catastrophizing are not ideal for communicating what we want to study in a nonjudgmental way. Pain is, generally, an extremely stressful and unpleasant experience for everyone, but each person is unique in how he or she experiences pain. Pain catastrophizing refers to experiencing pain as highly distressing, attention grabbing, and paralyzing―more threatening and out of control than what others with the same pain might experience. We should be communicating that some factors might be best addressed with physical treatment and some might best be addressed in the psychosocial realm. We need to get to a point where we can identify those things nonjudgmentally and nonpejoratively, and figure out how best to help people in those areas.
As a patient partner, Billie Jo, I’m sure you often hear psychosocial terms like catastrophizing and perceived injustice. How do you interpret those terms and their implications?
BJB: I started off with what felt like a urinary tract infection that became interstitial cystitis, which became MS, which became fibromyalgia, and now possible CRPS. I didn’t heal well after surgery and was very sick. I started doing research online and became determined to find a new treatment plan. That required me to go through all of the other procedures and see all of the other specialists before I could see a new urologist. Catastrophizing was raised nine out of 10 times, and nine out of 10 times I left a doctor’s office feeling completely confused. So I had to sit with this term, look at myself, and see what in my life I was doing.
The sad part is that, even when I was admitted to the hospital for surgery after all my consultations, the pain team accused me of catastrophizing, which made me angry. The last thing the acute pain team’s senior nurse said to me before she left my hospital room was that research shows a link between catastrophizing and perceived injustice. The term perceived injustice―that patients view their pain as unfair, blame it on others, and see it as the cause of significant, unnecessary, and permanent suffering―just burned into me. The surgery ultimately revealed a 10-centimeter piece of small intestine that had been forgotten in the initial surgery and caused a two-year-long kidney infection, so it feels kind of unfair. I lost everything, including my children, to my pain―that’s not fair, either.
We need better terms because doctors have misinterpreted the research community’s message, and it’s hurting patients at their time of need. After 14 years of watching the healthcare system, I can see catastrophizing every time I go to the ER―it’s clear that catastrophizing exists. But in fact, it’s a learned behavior: We’re training patients to be acutely aware of their bodies and the effect pain is having on their bodies, and then we only pay attention to the ones who are screaming out in pain. But that doesn’t give healthcare professionals permission to use catastrophizing or perceived injustice as justifications for their patients’ pain. These factors need to be considered and incorporated, just as much as age and opioid use, in treatment planning.
Both of you have significant knowledge about opioids and chronic pain, but from very different perspectives. Could you each describe your views on the opioid crisis and how your respective countries are handling it?
BJB: Right now, there’s an opioid, a fentanyl, and an overdose crisis in Canada, and special emergency measures have been implemented by municipalities. It’s absolutely, irreversibly changed the way that pain medicine is delivered, and it’s very disconcerting. We’ve thrown patients in the middle of something that is so beyond their control.
RE: That is a spot-on description of one of the biggest problems with the opioid crisis. In the United States over the last 15 years, there has been a steady uptick of overdose deaths, with an increasing proportion of them involving opioids. Statistically, the majority of those deaths are not people with chronic pain overdosing on their medications. However, it has emerged that one of the contributors to overdose deaths is an increasing availability of opioid medications, especially after events such as surgeries.
So first, the good, in terms of reactions to the opioid crisis: Some kind of monitoring is underway to figure out, on average, how much postoperative opioids people actually need. If it’s a lot less than what we’re prescribing now, we can give a lower standard postoperative prescription. Maybe that will help prevent some of the extra medication from getting diverted and out into circulation.
BJB: I’ve been through opioid titration twice. After the first time, extra pain medication that I had at home was stolen during a home invasion. When you go into the hospital for surgery, the hospital takes over providing your drug regimen so that the month’s supply of pain medication still at home might end up being stolen, diverted, or abused.
So when we talk about working with patients, it’s to identify these holes in the healthcare system that we can plug. Diversion is not helping anybody. I don’t like the fact that some of the patients I represent get their pills illegally. They get whatever their dealers had that day and the health risks that come with it.
RE: And the dealers may not know exactly what’s being sold, which is really risky.
BJB: Precisely. Nobody wants to talk about those issues because those are the ones that everybody’s afraid of. And how do you get the pain patient to get rid of that little store of medicine at home?
RE: After we had our daughter, my wife was prescribed maybe two weeks’ worth of opioids, and the leftovers, which consisted of nearly all of the prescribed pills, sat in our medicine cabinet for years because, why not? They don’t go bad, and what if you need them? That makes all the sense in the world.
It’s a hard balance, and some focus on reducing the extra supply of prescribed opioids makes sense. But the blanket application of opioid prescribing guidelines, and the underlying principle that all long-term opioid treatment is bad? That is not necessarily good for people.
It is certainly true that a minority of patients have misuse-related issues with opioids, and long-term treatment with opioids does have side effects such as osteoporosis and increased risk of falls. However, there have been large numbers of patients with chronic pain conditions that we can’t cure who have been stably, effectively, and helpfully managed on opioid regimens. But now, the politics of the situation is that, for people who have been on an opioid medication for 10 years and have never had any problems, doctors are understandably becoming worried about overdoses, diversion of opioids, and misuse. So they cut prescriptions steadily, down to only a little bit or none over a period of months. That rapid swing of the pendulum, from prescribing lots of opioids to a rapid reduction of prescriptions, has been extremely damaging for huge numbers of people who were helped by opioids. There have been a lot of people who have been on opioids for a number of years, and those medications have allowed them to function. Now they’re trying to make do without, and it is brutal.
BJB: With no alternative. I would really, really like to shift the focus from prescribing drugs to alternative therapies.
RE: Especially when you consider that nonpharmacological alternative therapies are not generally available to people.
BJB: Also, doctors in Canada are not citing our guidelines; the American CDC guidelines on opioid prescribing have become the mantra. And how do we quantify the impact of the opioid crisis on clinical practice?
RE: You see it a little in suicide rates, which are up a lot as a consequence. It’s just a really stark and dramatic consequence that may not be surprising.
BJB: And consider that many of those who take opioids are parents. What we don’t realize is that the real victims of the opioid crisis are the next generation. I’m a parent, and my family was ripped apart; the opioid crisis was used against me to take custody of my kids away from me. I can’t tell you the number of kids I have met who grow up with a big chip on their shoulder because their parents cannot keep up with today’s society because of their pain.
It’s a systemic problem. How are we now dealing with all the stigma that we’ve generated about opioid medications in our justice system? When pain becomes political and governments make kneejerk decisions, it has consequences. The policies have gone way too far; they’ve been completely misinterpreted, and I worry about what that’s going to do to the research. That’s why I advocate for patient engagement, because people who have never experienced pain are implementing policies and can’t possibly understand the implications of what they’re doing.
What current projects are you working on that you’re excited about?
RE: My favorite current project is a multisite study that’s funded by PCORI, the Patient-Centered Outcomes Research Institute. It involves patients with chronic low back pain who have tried many treatments like medications and surgeries. This project randomizes them to either cognitive behavioral therapy (CBT) or a mindfulness meditation-oriented treatment. Eventually we should get a cohort that will be big enough for us to start getting exciting answers about which subset of people benefit most from mindfulness, and which subset benefit most from CBT. What’s exciting about this is that we know both of those treatments can work well for some people, but they don’t work for everyone because nothing works for everyone. It might turn out that which treatment works best for someone just depends on that person’s preference.
In our healthcare system, you should be able to try everything until you find a treatment that works, but people don’t have the time or resources, and insurance doesn’t cover all of those things. If we can do anything that helps people identify the most effective treatment early on, we’ll be making a significant contribution. The earlier you can get the most effective treatment to people, the better.
BJB: The PEOPLE Centre has two projects that we’re equally excited about. The first one is to chart weather patterns and their impact on chronic pain. Anecdotal evidence suggests that extreme weather patterns are affecting many people. We hope to capture the extent to which barometric pressure fluctuations, humidity, and other environmental factors impact chronic pain and determine if we can predict periods of difficulty managing pain conditions. I live in an area that has a lot of new refugees and immigrants who originate from warm, dry climates; the effect that shifts in temperature and weather have on their bodies is not well understood. For some, it is against their religion to take opioids. So there’s a necessity to provide alternative therapies, but also to create awareness in the public about chronic pain by making it something that they can relate to. For example, it could be beneficial to educate employers on providing accommodations, such as working from home on bad pain days, for employees living with pain conditions.
The other project is on the effect of the entertainment industry and television content on the opioid crisis. It blows my mind what content is on television at 9 p.m.: how to use opioids, how to misuse opioids, how to get away with misusing opioids. Our preliminary findings are very promising. We’ve got hundreds of hours of recorded television shows―popular television shows that have won awards, which is scary but not surprising. If we’re looking for contributors to the opioid crisis, this might be why the numbers of overdoses aren’t improving.
Have your experiences, both personal and professional, changed the way you think of pain, or the definition of pain, over time, and if so, then how?
BJB: Absolutely, on both a professional and a personal level. The irony is that I started my career at Health Canada in communications. I used to think that I knew what people thought about the healthcare system until I became a part of it. My job was to analyze and report on public perceptions of healthcare in Canada. It has remained a top policy issue and a source of pride for most Canadians. Then I got sick and saw firsthand how many people are falling through the cracks. Their isolation, devastation, and frustration were humbling.
The other important point is that, as a person living with pain, you’re always evolving. If you choose, there is life beyond pain. Once you discover that, it opens a whole lot of doors, and it’s very rewarding.
RE: Yes, for me as well. I’m only partway toward a changed understanding of the nature of pain. Before I got into this field, I would have had a reaction to someone with chronic pain similar to how many people react to someone in pain. For instance, a person with chronic migraines will often hear something like, “You have headaches? I sometimes get headaches, too. I know what that’s like.” Now that I’ve been in the field for a while interacting with patients, families, and providers, I am aware of how preposterous that is. What’s true is that I’ve been fortunate enough to not have chronic pain myself, but that means I can’t fully know for sure what it’s really like. So I’ve gotten better at understanding, being sympathetic and empathetic, and hopefully saying mostly the right things and not so much the wrong things. But I still don’t actually have a first-person understanding of what chronic pain is like.
If you had a giant megaphone that you could use to speak to the whole world and you had 10 seconds to use it, what would you say?
RE: I can do it in less than 10 seconds. The people in your life will turn out to have been the most important things in your life, so treat them accordingly.
BJB: We must resist the urge to compartmentalize, and accept that pain is a very personal experience, affected by the environments and challenges that are often as unique and complex as the individuals themselves.
Catherine Paré is a PhD student at McGill University, Montreal, Quebec.