How Common is Pediatric Pain Anyway?
Pediatric chronic pain is often misunderstood and under-appreciated. Children, teens, families, school staff, and even healthcare providers often feel alone and overwhelmed. Why is this the case, and what can we do about it? Let’s dive in with some background, and keep reading to the end for some practical advice.
Why does pediatric chronic pain feel lonely?
Chronic pain in childhood can be an isolating experience for children and their families. Pain is often an “invisible illness” - with few or no apparent signs of illness or injury, there is not an obvious sign to others that someone is hurting or struggling.
Pain is also difficult to talk about. It seems like a simple word, but it hides a lot of complexity. Try defining it, right now! You might start with, “it hurts.” But what does that mean? The International Association for the Study of Pain defines pain as,
“An unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage.”
There is a lot to unpack there, but the point is, it’s a mouthful. It also highlights how there could be so many different reasons for having pain, and so much diversity in diagnoses, personal experiences, related symptoms, and impact on someone’s life. This can make it difficult to understand for yourself and your child, let alone explaining it to someone else. While we would hope it wouldn’t, it can sometimes feel embarrassing or shameful to share that you or your child experiences chronic pain.
That diversity and uncertainty in pain diagnoses and symptoms mean that each child and their pain experience is unique. You know that your child is special! So in a way, they are alone. In the field of pain research, there are few studies on specific pain diagnoses. Of those, migraine is one of the most predominant. However, researchers and clinicians with expertise in pain recognize that despite the diversity in diagnoses, there are strong patterns of mechanisms of chronic pain, experiences of chronic pain, and impact of chronic pain on children’s lives. Therefore, there is a growing body of research that is helping us better understand and treat the community of children and teens living with chronic pain.
Another reason that your child can feel alone in their pain is that healthcare providers are not always trained to assess and treat pediatric chronic pain. You may have experienced your child being dismissed, or getting bounced around from doctor to doctor and test to test. Due to this realization, most licensing boards for healthcare providers (including for physicians and psychologists) require annual participation in continuing education focused on chronic pain. Of this, there is sometimes insufficient attention paid to pediatric pain. Fortunately, through education in school and continuing education, more and more pediatricians and specialists are appreciating the significance of pediatric chronic pain, and are providing better recommendations for treatment. Personally, I am trying to help fill this gap by training pediatricians on migraine and headache treatment through Project ECHO Headache in collaboration with University of Michigan, and through my participation in the Michigan Psychological Association’s Pain Task Force.
So.. how common is chronic pain in childhood?
Overall, studies report prevalence rates ranging from 11-38%. That’s at least over 1 in 10 children, and upwards of 4 in 10.
This range of estimates comes from a review of studies across the globe, examining children with different ages and different diagnoses.
The systematic review authors' note that the studies all used different definitions of chronic pain, but all definitions featured some component of frequent pain that has been persisting for at least three months.
Here are some other patterns researchers observed:
The most common pain locations were: headache, abdominal, and musculoskeletal.
Prevalence rates were generally higher in girls. In some pain conditions, prevalence rates were equal between boys and girls until puberty, when the proportions changed.
Pain prevalence increases with age- it becomes more common in adolescence.
What Can You Do?
Educate Yourself and Your Child:
Some online resources include:
US Pain Foundation: https://uspainfoundation.org/
American Migraine Foundation: https://americanmigrainefoundation.org/
Some great books for parents include:
When Your Child Hurts, by Dr. Rachael Coakely
Managing Your Child’s Chronic Pain, by Dr. Tonya Palermo & Dr. Emily Law
Conquering Your Child’s Chronic Pain, by Dr. Lonnie Seltzer and Christina Blackett Schlank
Communication:
Talk openly about pain among your family (but don’t let it take up your whole life).
Help your child or teen practice sharing about their pain to someone else.
Be proactive in communicating your child’s needs to their school and coaches.
Build Community and Support:
Be part of the pain community! Look into opportunities with a foundation related to your child’s pain.
Build your pain team- connect your child’s healthcare providers, schools, and coaches, as well as friends and family.
Click the Get Started button above to learn about individual pain psychology services to support your child’s unique needs. Ask about upcoming group programs so that your child or teen can meet and grow with others navigating similar concerns.