Millions of children across the globe suffer from chronic pain, yet the use of evidence-based best practices for managing pediatric pain is limited, even in wealthier countries like the United States and Canada. Making matters worse, even the most well-established interventions for pediatric pain may not always be covered by insurance. The result is that many children do not receive adequate care that addresses their pain and improves their overall quality of life.
Now, Kathryn Birnie, University of Calgary, Canada, and colleagues have published a new analysis that surveys the scientific literature to identify pain management strategies in kids that are best supported by evidence. Those strategies include both psychological interventions as well as medication. The article also highlights gaps in knowledge about the effectiveness of other treatment approaches and makes the case for specific priorities that should be the focus of future research and public policy initiatives to advance pediatric pain care.
Stefan Friedrichsdorf, University of California San Francisco, US, a leading pediatric pain expert who was not involved with the study, called the results “extremely compelling.”
“About 20-30% of kids and teenagers are currently living with chronic pain. That’s a huge number,” said Friedrichsdorf. “Yet, despite these numbers, a large number of children’s hospitals and regional health centers unfortunately do not offer adequate pain services for these kids. Partly this is because hospital leadership, incorrectly, does not see it as a priority, and partly because there is a lack of research to demonstrate how much of which intervention – whether it’s physical therapy, psychology, family support, sleep hygiene, school attendance, or integrative medicine – is required for each child.”
The analysis was published on April 20, 2020, in the Canadian Journal of Pain.
Learning what matters most
Birnie and colleagues were inspired to do the new analysis after completing their Partnering for Pain project. This project, known as a priority setting partnership, engaged hundreds of pediatric pain patients, their families, and healthcare providers to better understand the “lived experience” of chronic pain in children. The goal was to develop 10 patient-oriented research priorities based on that experience.
“We followed a method that was developed by the James Lind Alliance to help us develop those priorities,” Birnie said, referring to a British non-profit initiative that brings together patients, carers and clinicians to help develop health priorities. “Traditionally, researchers tend to be the ones who determine what’s most important to study. We wanted to empower the voice of the kids and we used a rigorous process to reach consensus on 10 key priorities, which ranged from understanding how acute pain ends up becoming chronic pain to how to increase financial support for different evidence-based therapies.”
“But once we came up with those priorities,” Birnie continued, “the next question became, ‘What has been done in these areas already? What do we already know?’ We wanted to be able to say, this is what evidence already exists, and these are the identified priorities that need more work.”
Creating an evidence and gap map
To do so, Birnie and colleagues created what’s known as an evidence and gap map. They searched the published research literature for relevant articles, ultimately identifying 47 published, peer-reviewed, systematic review articles or clinical practice guidelines related to pediatric chronic pain interventions. (A systematic review is a type of review article where the authors try to synthesize findings from a group of studies in a particular area of research, rather than focus only on a single study).
The researchers took the data from all of the studies they examined and also ranked the quality of those studies, in order to create a visual representation of both the existing evidence for particular pediatric pain treatments and the evidence gaps.
The authors found that one-third of the studies included in their analysis were of high quality, while half were of low or critically low quality. Further, the largest proportion of studies covered psychological (roughly 49% of studies) and drug (40% of studies) treatments. But only about 15% looked at physical interventions, including physical therapy, which is commonly used to treat chronic pain in kids. The researchers said there was strong evidence to support the use of psychological interventions in pediatric patients, yet this stands in stark contrast to the limited ability of most patients to easily access this type of help.
For the most part, Birnie said the results did not surprise her. But the lack of evidence for physical therapy-based interventions did come as somewhat of a shock.
“Physical therapy is a key intervention when it comes to pain management in kids and yet this was one of the areas where we don’t have a lot of strong evidence,” she said. “One of the top priorities is to understand what physical treatments are best to improve functioning, and this is a discrepancy that is important to address in future research.”
Beyond that gap, Birnie and colleagues also discovered that the vast majority of reviews they included in their study did not look comprehensively at treatment outcomes. While all the reviews reported the effects of interventions on pain intensity, only about 61% reported on physical functioning, 46% on emotional functioning, and 48% on quality of life. Measures like sleep and treatment satisfaction were also neglected, coming in at 11% and 30% of reviews, respectively.
“We need to challenge what outcomes are traditionally used to judge whether an intervention is effective,” said Birnie. “Pain is so much more than just a rating of zero to ten; that can’t be the only marker we use to judge how effective a pain treatment is.”
Finally, when comparing the evidence and gap map to the Partnering for Pain priorities, the authors discovered that approximately one-third of the reviews did not address any of the desired priorities. Two priorities – increasing government and healthcare organization financial support as well as educating school personnel about pediatric chronic pain – had no relevant reviews in the literature at all.
“We need to consider how we are sharing science with organizations like schools or insurance companies,” she said. “Ultimately, how pain is treated will come down to some policy-level decisions. We need to share our findings in a way that is effective for all these different audiences who have a say in what treatments are available for kids who live with chronic pain conditions.”
Putting best practices into place
Friedsrichdorf said that the results of the analysis were excellent and not surprising to him. He added that those with experience managing pediatric pain have seen the value of psychological and rehabilitative approaches to pain management, yet many insurance companies will only cover drug interventions.
“We see in the clinic that behavioral changes like sleep interventions, getting kids back to school and into an age-appropriate routine with peers, amongst other things, can help them better cope with the stress and anxiety of pain. But, that said, there’s only limited research to back this up; the kind of studies that can say this is the best, most effective way to use these kinds of approaches with kids are often lacking,” Friedsrichdorf said. “So this sort of gap analysis is important. Scientific evidence should encourage hospitals to invest in pediatric pain programs as well as demonstrate to insurance companies that these kinds of interventions need to be reimbursed, because currently neither is happening. The gap analysis in this study can also direct funding agencies to where they can best invest research dollars in the future.”
Birnie is hopeful that the evidence and gap map will be used by doctors, patients, payers, and policy makers – all the stakeholders involved with pediatric pain management – to help facilitate better pain management for kids, across the globe. She also hopes this work will inspire the research and policy changes required to implement the Partnering for Pain priorities.
“We found there’s a lot of great science about how we can improve pain management in kids. That’s important because, by identifying what evidence is out there we can make sure that good therapies and interventions are more widely available to the children who need them the most,” she said.
“The second point I’d emphasize,” Birnie continued, “is that the gaps are also important for us as a research community. As we think about continuing to build science in this area, we should find ways to address the gaps between what research has been done and what people who live with this experience every day want and need to improve their lives. It gives us the direction we need to move forward.”
Kayt Sukel is a freelance writer based outside Houston, Texas.