Even kids get headaches. Lots of headaches. A U.S. survey found that 17 percent of children had “frequent or severe headaches” according to their parents, and that rate is thought to be as high as 30 percent among post-pubescent children.[i]
The UAB pediatric neurology group at Children’s of Alabama knows the numbers. Headache is the second-most common referral to their practice. In 2019, for instance, they received at least 40 referrals a month of children with headaches, and that number has skyrocketed since the start of the pandemic. And that, according to UAB Child Neurology Residency Program Director and pediatric neurologist Sarah Novara, MD, MSHQS, makes it difficult to effectively triage patients into available appointment spots.
“Our goal is to best help these children be evaluated and managed, but we knew our referral process was not what it could be,” she said. At the same time, the neurology group also recognized community pediatric providers could help many of the patients they referred if they had the tools to succeed, freeing up neurologists to see those who required more complex care.
“It became apparent that we weren’t educating the community providers well enough so they would feel confident managing primary headache disorders in children and adolescents,” neurology faculty Scott Turner, DNP, said. That’s important because most headaches are not caused by a life-threatening condition like a brain tumor, which is exceedingly rare.
Evaluating and treating headache patients as quickly as possible is critically important given that migraine, a very common headache type, is the second leading cause of disability in the world.[ii] Plus, recurrent headaches in children can significantly impair their quality of life, leading to missed school and missed opportunities for successful learning.
The pediatric neurology team embarked on a mission from 2019 to 2020 to better educate primary care providers about pediatric headaches and, in turn, create a better system of triage and communication to the pediatric neurology group.
The result is the PCP Headache Referral Checklist. With a large, red stop sign front and center, the message is clear: referring providers need to work through the brief checklist to check for headache red flags that should prompt a referral to the emergency department. These include:
- Focal neurologic deficit
- Altered mental status, high fever and neck rigidity
- Sudden severe headache (called a “thunderclap headache”)
- Headaches that wake the child from sleep
They also document special circumstances that may necessitate an earlier appointment with the neurology team, such as headaches that recur 15 times or more a month.
The checklist also contains tools to help primary care providers manage their patients’ headaches while they wait for their visit with a specialist, including medication doses, a link to the Alabama State Department of Education school medication permission form, and a link to the Headache Relief Guide, an online portal specifically designed to help children learn about headaches and how to prevent and treat them. A QR code provides a link to the American Academy of Neurology and American Headache Society guideline for the acute treatment of migraine in children and adolescents.
“The primary care provider has often done a very good workup of the child,” Novara said. “The checklist helps us see that and avoid redundancies.”
The team piloted the form with three Birmingham pediatric practices, where it proved highly successful for both the referring provider and neurology team triaging. “We didn’t know if they would go for it,” Novara said. “They’re busy, and they already have a lot of forms to fill out, but they loved it.”
“(Nurse practitioners) don’t get a lot of guidance or training in headache,” Turner said. And the time primary care providers can spend with patients is limited. The checklist, he said, “gives them the support to make decisions for themselves.”
Today, the checklist is required with the referral. A pediatric neurologist or nurse practitioner reviews it and triages the patient for appointments. Even before the child is seen by the pediatric neurology group, however, the primary care provider can start some of the interventions listed on the form. “This is empowering and also helps the family see that the referring provider is on the same wavelength as the pediatric neurology team at Children’s of Alabama,” Novara said.
One important outcome is a better-quality referral, she said. “We have more information and are better able to care for the patient.”
In the meantime, the number of kids with headaches is increasing due to COVID. For some, recurring headaches are a lingering symptom of a COVID infection. In other cases, Turner said, parents held off seeking care during the height of the pandemic. Plus, the pandemic itself took a toll on children’s mental health. “When you completely turn a child’s life upside down, you’re going to end up with a lot of stress, which we know is a common comorbidity with chronic pain.”
In addition to the universal use of the headache referral checklist, the team is also reaching out to community providers through social media and hosting webinars and other educational activities about pediatric headache. “Primary care providers really seem to want this information,” Turner said.
[i] Lateef TM, Merikangas KR, He J, Kalaydjian A, Khoromi S, Knight E, Nelson KB. Headache in a national sample of American children: prevalence and comorbidity. J Child Neurol. 2009 May;24(5):536-43. doi: 10.1177/0883073808327831. PMID: 19406755; PMCID: PMC2794247.
[ii] Powers, Scott W., et al. “Prevalence of Headache Days and Disability 3 Years After Participation in the Childhood and Adolescent Migraine Prevention Medication Trial.” JAMA Network Open, vol. 4, no. 7, American Medical Association, 2021, pp. e2114712–e2114712,