Editor’s note: Tonya Palermo, PhD, is a professor of anesthesiology, pediatrics, and psychiatry at the University of Washington School of Medicine, Seattle, US. She is also an associate director for the Center for Child Health, Behavior and Development at Seattle Children’s Research Institute. Palermo’s primary focus is the assessment and treatment of chronic pain in children and adolescents. She is also passionate about delivering psychological treatment via eHealth and mHealth (mobile health) interventions. In this interview, Palermo chats with PRF Correspondent Angela Pascale, a PhD student at Virginia Commonwealth University, Richmond, US, to discuss her path to pediatric pain research, the projects she is working on now, and much more. Below is an edited transcript of their conversation.
How did you get interested in researching pediatric chronic pain?
I went to college at UCLA and had the privilege of being introduced to pediatric pain early on there by working as a research assistant for Dr. Lonnie Zeltzer. She is a pediatrician and served as director of the Pediatric Pain Program at UCLA. Being able to work there sparked my interest in pain management and interdisciplinary treatment, as it was a field that I didn’t know anything about, and really helped me articulate goals for training further by getting a graduate degree in clinical psychology.
When did you first realize that psychological factors influence pain?
I feel fortunate to have trained within an interdisciplinary pain program early on and being exposed to a biopsychosocial conceptualization of pain. Therefore, I always saw pain as having biological, psychological, and social influences, and that’s something that the early studies I worked on with Lonnie explored, such as the role of anxiety and coping style in children’s responses to pain. My immediate experiences on those studies helped me understand the importance of considering the whole child, and all of these different factors play a role in pain perception and pain behaviors.
What is the mission of your research lab?
I’ve been in Seattle for 10 years at the Seattle Children’s Research Institute; my lab is called the Pediatric Pain and Sleep Innovations Lab. Our mission statement is to improve the lives of children with pain and their families through innovative clinical, translational, and outcomes research. The lab is interprofessional with psychologists, anesthesiologists, and epidemiologists, and we’re all studying different areas of pain prevention and treatment, including the interrelationship of pain, sleep, and psychological factors; the development of psychological and family treatments to either prevent or treat chronic pain; and implementing innovations in technology for pain assessment and intervention.
What are some of the most promising ways to evaluate pain in children?
One of the things that really comes as a challenge in pediatrics is the large developmental range. But, that said, a lot of people have worked on developing behavioral methods of pain assessment for younger ages as well as subjective measures of pain. In my own work, because it’s focused on chronic pain in slightly older children and adolescents, I’ve focused more on understanding how we go beyond measuring only pain intensity to characterizing how pain impacts daily life in areas of importance to children and families – so understanding the functional consequences of pain on day-to-day important life activities.
I’ve been on a number of task forces and other committees working to develop core outcome sets so that we can recommend what domains should be measured when we’re studying pediatric chronic pain interventions.
What domains and measures do you use in your work?
The domains that we’ve focused on the most are concepts of pain-related disability or activity limitations due to pain. The specific measures we use depend on the situational context and what the goals of the study are. In general, we try to understand, from a child’s perspective, what are important activities that are limited because of pain, and these might include vigorous physical activities but also social and recreational activities. That’s a really important aspect of how we then evaluate our interventions with children; our goal is to get children back to being able to participate in those important areas of their daily life that they’re missing out on.
Coming back to psychosocial factors that influence child chronic pain, which ones do you focus on?
I started off my faculty career at Rainbow Babies and Children’s Hospital in Cleveland, and my early research there was focused on understanding individual differences in pain-related disability – why are certain children’s outcomes different from other children’s outcomes when they have the same pain condition? I was really interested in exploring a wide range of factors, with the goal to inform a family-based cognitive-behavioral treatment [CBT]. Before we consider individual differences, though, it is important to clearly define the outcomes of interest.
My research aimed to understand the broad range of pain impact on children’s physical activity, sleep, psychological functioning, and parent and family life. This included understanding child anxiety and depressive symptoms, difficulties with sleep, and parent responses to the child’s pain behaviors. I learned that parental responses to children’s pain played a role in the level of disability experienced by youth, especially for those youth with anxiety or depressive symptoms.
From early on the goal of my research in understanding individual differences in functional outcomes was to devise clinical treatments to decrease pain-related disability. Using a family-based cognitive-behavioral model, I made my first interventions a dual focus on teaching youth coping skills to reduce the impact of pain on their daily life, and teaching parents adaptive strategies for responding to children’s pain, effective communication, and modeling positive ways to cope with pain or stress.
From your work, what are some specific examples of how you translate research findings into interventions, such as sleep interventions?
Taking sleep as an example, we found early on that sleep problems were common and that they were associated with worse pain-related disability. When we start to articulate what the exact sleep problems are, very often it’s insomnia symptoms – difficulties both with falling asleep as well as frequent waking during the night – so these are problems with both onset and maintenance of sleep. Knowing that sleep problems are common and impact pain, we can integrate interventions that address sleep into our treatments for children.
In a more generic CBT model, sleep is often not included, or it may be included just as a suggestion that sleep habits are important. But comprehensive treatment of sleep, such as insomnia treatment, is not typically a part of CBT for chronic pain. So we’ve developed a separate CBT insomnia intervention that can run in parallel or be integrated with pain treatment for youth with co-occurring pain and insomnia.
What are some of the most exciting findings from your research thus far?
This is a hard question because there are lots of things that are happening in my lab that are exciting. Early on, what I got most excited about was how to use technology to enhance monitoring of pain and other symptoms, and then to deliver treatment. In the late 1990s, I had a small grant to use PalmPilots; a PalmPilot was a personal digital assistant, which was a small computer device that could run very limited software on it; it was like a precursor to the iPod.
We programmed the PalmPilots to collect pain and symptom ratings for a group of kids with sickle cell disease and for a group with arthritis. We were interested in understanding how pain impacts day-to-day functioning, and how prospective monitoring compared to retrospective reports. I had a lot of success with kids being interested in recording their symptoms using technology, and the data were really rich because they let us look at temporal associations and better understand how pain may impact things like sleep and mood from a day-to-day standpoint. Later, of course, we began to use technology to deliver CBT to youth with chronic pain.
What are some disadvantages that you’ve run into with this kind of technology platform, and have you been able to overcome them?
Engagement is the largest challenge; you can have a terrific and effective intervention, but if people don’t use it then you’re not going to make an impact. Although many interventions are found to be acceptable and feasible to children and families, this doesn’t mean that they will engage with these interventions at a high enough dose to benefit. We need to study ways to engage youth in technology-delivered interventions, especially in real-world settings. Fields that are using Internet and mobile health interventions are still struggling with finding the best methods to deliver these interventions in a way that people will engage and then benefit.
What are the latest innovations in technology for assessing pain?
There are still advances in the use of technology for daily monitoring, although now this is mostly using a cell phone. We can capture data on cell phones through customized applications or through REDCap [a web application for developing online surveys], which has a daily survey feature. These surveys come out very nicely on a smartphone in terms of how they’re able to be viewed. So that’s really expanded options for daily symptom monitoring.
Probably the biggest innovation, though, is some of the new metrics we can use to understand pain in daily life. The simplest way that diaries have been used is to average pain over the reporting period. So we have someone do a diary for a week, and then you report what their average pain level was. While this does have an advantage over a retrospective report from a patient, you lose the richness of the whole data capture during the week – all of the important things about the variability of that person’s pain during the week.
So now we have been investigating how to use other metrics, such as how much time someone is at a high pain level, or what their peak pain level is, and how much variability they have day to day, as well as their rate of recovery of pain after an acute event. It’s really thinking about whether these other metrics tell us something more meaningful about the patient’s experience.
You mentioned earlier that you study family treatments. What influence does the family unit have on pediatric chronic pain?
In pediatric pain research, we have developed conceptual models about the role of family and parent factors. In a model that I developed with Christine Chambers in 2005, we considered factors within the individual parent, such as the parent’s own level of anxiety or depression; within the child-parent dyadic relationship, such as how they communicate; and within the broader family environment, such as whether the environment is supportive or chaotic. At each of these levels there are factors that can influence a child's or teen’s response to pain. We know the most about individual parent factors, and we know the least about the dyadic and broader family environment and need more research on those topics.
What additional directions are next for the field of pediatric chronic pain research?
I think there will be continued development of eHealth and mHealth interventions for pediatric chronic pain; as we’ve seen during the COVID-19 pandemic, there’s now a lot of interest broadly in using telehealth interventions. Our field was ahead of the curve because pediatric pain researchers recognized over a decade ago that remote treatments were needed to improve children’s access to the limited pediatric pain clinics. There are examples of Internet- and mobile-delivered interventions that are effective in pediatric chronic pain populations, but we need more research, including studies on different modalities to understand the benefits of videoconferencing versus, for example, a self-guided Internet intervention. Those studies just haven’t been done, and so, given how much interest there is right now, I would expect a surge of research in this area.
What are some of the biggest areas of improvement needed in pediatric pain research?
When I look at pediatric pain research as a broad field, probably one of the largest challenges is that there are small sample sizes of children with any particular condition of interest at any one treatment center. The result is that there are many published studies that have very small sample sizes, and they usually have a wide age range, which has obscured understanding of developmental effects. More collaboration across centers as well as access to well-defined patient registries would enhance research in pediatric pain.
What advice do you have for future pain researchers looking to start a career in pediatric pain?
There is good news for future pediatric pain researchers, because, compared to 25 years ago when I entered the field, pediatric pain is now a well-developed field with a considerable depth of research and experienced professionals. Pediatric pain is making its way into larger initiatives devoted to pain, creating new opportunities for funding. For example, the NIH’s HEAL Initiative, which is focused on pain and opioids, has funded a number of pediatric studies.
There has also been increased collaboration between pediatric and adult pain researchers around measurement and outcomes, including longitudinal studies of how pain may continue into adulthood. It’s important for those entering the field to recognize that pediatric pain does not end at the age of 18, and our discoveries and early treatments in childhood can influence adult health and development.
In addition to learning about pediatric pain through journals and scientific organizations devoted to this topic, students who are newly entering the field should be sure to find a mentor in pain research. The pediatric pain community is a generous one with many wonderful professionals willing to give their time.
Angela Pascale is a PhD student at Virginia Commonwealth University, Richmond, US.