The first national standard for managing pain in children and adolescents in Canada was published Monday, and its creators say it’s also a global first.
Describing most pain care for children in Canada as “woefully out of date,” the non-profit groups behind the new Paediatric Pain Management Standard said it establishes guidelines for treating pain in children from birth to 19 years.
The document’s introduction notes that despite exponential growth of scientific evidence related to pediatric pain, Canadian children “continue to experience untreated and preventable pain.” It also highlights how as recently as the 1980s, the infant brain was believed to be too immature to perceive pain.
“In the mid-eighties, babies were receiving open heart surgery with no anesthesia…Honestly, (I’m) covered in goosebumps saying that out loud,” children’s pain researcher and Edmonton-based pediatric emergency physician Dr. Samina Ali told reporters during a briefing prior to Monday’s launch.
“There was a belief that their nervous system was so immature that they would, one, not feel it. And two, not remember it. We know the body remembers. Even if those little ones don’t have the words at that time, their bodies remember, and we see the long-term consequences of that in their physical and psychological development.”
The next big gain
The first ever standard is a collaboration between Halifax-based Solutions for Kids In Pain (SKIP) and Ottawa-based Health Standards Organization (HSO). The two non-profit groups also worked with people who have lived experience.
Ali said while there’s been a “tremendous revolution” in our understanding of children’s pain the last few decades, health care is unfortunately slow to adapt to new information. She described the new standard as a “key tool” in closing the knowledge-to-practice gap.
“Now we’ve got this group of incredibly dedicated experts, of people with lived experience, families, knowledge creators, knowledge users, (who) have gathered together with public consultation and created a tool that gathers all the most important considerations to avoid that untreated pain,” Ali said.
“That’s where we’ve landed now…We started in a dark place not too long ago. We’ve made tremendous successes, tremendous gains, and this is like the next big gain that we’re standardizing for our entire country. That’s pretty cool.”
‘Key step forward for Canadian children’
Ali said emergency medicine literature shows that children are “way less likely” than adults to receive pain medication.
In addition, pain disproportionately affects Indigenous and Black youth as well as children with complex medical needs. That’s also reflected in the standard.
“We know that Black children are less likely than white children to receive pain care in North America and acute pain medications with obvious injuries like broken arms and appendicitis, things where there’s no debate that someone is having pain. ,” Ali said.
“These considerations happen in the acute immediate setting and then are even more exemplified in the chronic setting. So, these are issues that affect essentially all children when you consider intersectionality.”
Ali said children’s pain remains undertreated worldwide. With 60% to 80% of children receiving their urgent and emergency care outside of a children’s hospital, she said the new standard will help health care providers deliver better, more equitable care to all children no matter where they live.
“The focus on equity based on gender, race, sexual identity, religion, ability, and other intersectional considerations is so current and forward thinking,” Ali said.
“This standard is a key step forward for Canadian children to get the care that they are entitled to and deserve.”
Childhood pain has “significant” consequences
Clinical psychologist and SKIP associate scientific director Dr. Katie Birnie also served as chairperson of the new standard’s working group. She told reporters pain in childhood is “very common” and has significant short and long-term consequences for children and their families.
One in five children will deal with chronic pain (lasting months to years) before reaching adulthood. Birnie said two-thirds will become adults living with chronic pain. This puts them at increased risk for mental health issues, substance use, and socioeconomic disparities into adulthood.
Hospitalized children also experience “an incredible amount” of pain, often from medical procedures. Birnie said Canadian data indicates that on average, a child in hospital will deal with six painful procedures every 24 hours.
That number more than doubles for babies in neonatal intensive care units (NICUs). On average, they experience up to 14 painful procedures in a day.
“We often think about a single needle experience as something relatively minor, but when that happens again and again and again and is poorly managed, this is often a major source of medical trauma for children and their families in Canada,” she said.
Birnie said if poorly managed, short-term pain induced by medical procedures is also a known contributor to vaccine hesitancy.
But it doesn’t end there.
“When we see studies of babies in the neonatal intensive care unit as they develop into later childhood, we can see that it impacts their brain development, but also these short term and chronic pains influence children’s emotional functioning and their friendships, how they function physically, (with) their families, school, and sleep,” Birnie said.
‘It’s really an issue we need to tackle and need to prioritize through large scale initiatives such as this national health standard.”
A first in the world
The standard’s 34 criteria spell out what leaders and health care teams must do to achieve equitable quality pain management within hospital settings. Birnie said that includes children’s hospitals and community/regional and rehabilitation hospitals across the country that provide onsite pain management for children and adolescents.
The standard also identifies four “transformative” goals: to make pain matter, make pain understood, make pain visible, and make pain better. Birnie said those key goals were drawn from a 2021 Lancet Commission on Child and Adolescent Health intended to “transform how pain in children is treated and managed around the world.”
The standard could also be used outside of hospitals to ensure proper pain management no matter where children are receiving health care.
“I think also about school-based settings where vaccination clinics are happening as one key example where procedural pain from a needle procedure is really key,” Birnie said.
“There are a number of areas outside of the hospital environment, whether it’s organizations, professions or other health care settings, where people can learn from this work.”
Besides being a Canadian first, Birnie believes it’s the first national health standard for pediatric pain management in the world.
“While there are other countries that have set forward national pain strategies, none have taken it to this step of developing a national health standard,” Birnie said,
“We’re really proud of that and excited that hopefully this can be a beacon and a light for some direction for others around the world as it will be freely available.”
‘Didn’t have a voice as a child’
Now a resident physician at BC Children’s Hospital, Dr. Justina Marianayagam experienced chronic pain as a child. From a patient perspective she’s excited the standard was created with family and patient input.
“When I was a patient, I really felt lost and really felt like I didn’t have a voice as a child,” Marianayagam told reporters.
Originally from the Northwest Territories, she said one of the new standard’s many strengths is that it goes “beyond the urban centres like Toronto and Vancouver.”
Having graduated from medical school last year, Marianayagam could only recall one lecture on pain in her four years of training. She said this further underscores the “huge need” for implementation of the new standard.
Marianayagam was born prematurely to a mother who was a new immigrant. Her mother had never seen snow before, didn’t have a robust understanding of the health care system, and found herself medevaced from Yellowknife to Edmonton, 1,500 km from her small family.
“As a health care provider, when I work in the NICU…every single patient I see I make sure that there is a pain assessment on my end as a physician. You’re asking parents, ‘Do you think your child’s in pain? Is there anything that you think that has changed from their baseline that we can do better,” Marianayagam said.
“Every single patient, I bring that forward remembering my own mom and remembering myself as a patient experiencing pain, maybe not having a safe space…There’s a lot of personal and patient experiences that we’re holding in each one of these points in the standard that makes it so important to me and to families and to my mom, as a way to say, ‘Hey, mom, 20-plus years later we’re doing better for patients.’”
Taking it to the next level
In an interview with the Halifax Examiner Monday evening, Dalhousie University professor and SKIP’s scientific director Dr. Christine Chambers said she and her team were thrilled, pleased, and excited by the publication of the new standard.
“Generating new knowledge and scientific discovery is so important, and that’s what we do in universities as professors and researchers,” Chambers said. “But we are really taking it to the next level to make sure all this great research that we’re world leaders in becomes used to benefit children.”
The new standard document, she said, was one of SKIP’s “big deliverables” when the non-profit was funded in 2019.
“It really has been four years in the making. Huge teamwork, incredible expertise brought in from many different lenses,” Chambers said. “We’re just really proud that Canada led this first national standard in children’s pain management in the world.”
A mom of four, Chambers wanted to ensure her research was put into practice and policy. She said the new standard does just that.
“I was realizing that all this great science I had contributed to my whole career wasn’t being used to the benefit of my own kids, and so for me it’s very rewarding to see this really come to fruition,” Chambers said.
“I’ve always been able to advocate for evidence-based, quality, equitable pain care for my own children. Now this standard allows every child in Canada to be able to benefit.”
The recommendations laid out in the new standard aren’t mandatory. Chambers said because the standard is only going to be helpful if implemented and actually used, the next phase will involve the development of an implementation plan.
“Ultimately, we are hoping that this standard will become part of the suite of standards that become mandated, that hospitals have to fulfill, as part of their accreditation,”she said.
A virtual town hall for those interested in supporting and learning more about the new standard is scheduled for April 20 from 1:30-3pm. It will include a question and answer session. Click here to register for the event. Visit HSO to access the new Pediatric Pain Management Standard.