Abstract
Background
The transition from pediatric to adult headache care creates an opportunity for changes in care, although the nature of these changes has not been previously explored. We aim to describe the changes in management during this transition period.
Methods
A retrospective chart review was conducted on 80 patients who transitioned from pediatric neurology to adult headache clinic within the span of 1 year. The demographics, diagnoses, and treatment regimens were analyzed.
Results
On average, patients held their first adult headache clinic visit 118 days following their last pediatric visit. More than half of patients experienced changes in either diagnosis or treatment during transition.
Conclusion
This research emphasizes the significant influence of care transitions on the management of patients with primary headache disorders.
Migraine is a chronic condition that can evolve over the lifetime of the patient. Pediatric migraine has prevalence ranging from 7.7% to 11% of the population, which increases over the course of childhood and puberty. 1 Pediatric chronic migraine, an underrecognized headache entity in younger populations, has prevalence of less than 2% of adolescents. 2 The transition of migraine care from the pediatric neurologist to adult practice creates an opportunity for diagnostic and therapeutic reevaluation. To date, the nature of changes to treatment or diagnosis of primary headaches has been sparsely explored in the literature. Prior work has focused on the evolution of headache symptomatology and prognosis during the life span. 3 Although there have been recent recommendations on how to properly transition pediatric neurology patients to adult practice,4,5 the study of specific changes made during these transitions has not been elucidated. We aimed to evaluate to what extent changes occurred in diagnosis or management of headache disorders in patients transitioning care from general pediatric neurologic care to adult headache specialists within our institution.
Methods
We conducted a retrospective chart review of patients who transitioned for management of their headache disorder from pediatric neurology to our adult headache clinic. Our study was approved by the Stanford Internal Review Board. We searched within the Stanford Research Repository (STARR) using Boolean terms to build a list of patients seen by any adult headache clinic faculty and saw a Stanford pediatric neurologist for a chief concern of headache within 1 year of their first visit in the adult headache clinic. We included patients between 16 and 25 years of age to account for the variable timing of the transition between pediatric and adult care, and searched encounters between January 1, 2014, and July 24, 2024. Patients with pediatric and adult headache visits greater than a year apart; who transitioned to a different subspecialty clinic; or who had incomplete or missing documentation were excluded. These initial criteria yielded 149 patients, but manual review of the charts for the inclusion and exclusion criteria decreased the number of patients who met the criteria to 80.
Included patient charts were then reviewed for demographics including sex, age, and race or ethnicity. Diagnoses made were also recorded, with separate entries for those made at the last pediatric neurology visit, those at the first adult headache center visit, and if a change occurred. Acute and preventive medications recommended or prescribed were similarly recorded, including those that were stopped or started at the first adult headache center visit. Data analysis and reporting adhered as closely as possible to STROBE guidelines. 6
Statistical Analysis
Descriptive statistics were calculated including percentage, mean, and standard deviation using Microsoft Excel. No tests for statistical significance were conducted. There were no missing data, and this is the primary analysis of these data.
Results
Demographics for the 80 patients who met inclusion criteria are summarized in Table 1. Eighty percent of patients included in our study were female. The mean age of patients at their final pediatric neurology visit before transition was 18.0 ± 1.2 years, whereas the mean age of patients at their first adult headache visit was 18.3 ± 1.3 years. The mean number of days between last pediatric appointment and first adult headache clinic visit was 113 ± 89 days. Half of our cohort identified as White, non-Hispanic/Latino, followed by other, non-Hispanic/non-Latino (12%); Asian, non-Hispanic/non-Latino (11%); and other-Hispanic/Latino (8%).
Demographics of Included Patients (N = 80).
Diagnoses are summarized in Table 2. The most common pediatric headache diagnoses were chronic migraine (29%) and chronic daily headache (24%). At initial adult headache visit, the most common diagnoses were chronic (60%) and episodic (27%) migraine. More than half of patients (54%) who transitioned care from pediatric to adult headache providers received a change in diagnosis at their first adult headache visit. Chronic daily headache was the most frequently changed diagnosis, with 18 of 20 (90%) of those patients receiving a narrowed diagnosis.
Changes in Diagnosis Between Pediatric Neurology and Adult Headache Clinic Visits.
Medications recommended at last pediatric neurology and first adult headache clinic visits are listed in Table 3. Eleven of the 80 patients (14%) were not prescribed acute migraine medications at the time of their last pediatric clinic visit; however, this proportion decreased to 9 of 80 (11%) after the first adult headache clinic visit. More impressively, although 18 of the 80 patients (22%) were documented as not requiring preventive medication at their last pediatric visit, 14% of these patients were placed on a preventive medication at their first adult headache clinic.
Medications Recommended at Last Pediatric and First Adult Clinic Encounters.
Abbreviations: FDA, US Food and Drug Administration; NSAIDs, nonsteroidal anti-inflammatory drugs.
FDA approval for migraine in children ages 12 years and older.
FDA approval for migraine in children ages 6 years and older.
FDA approval for acute migraine in ages 8 years and older, preventive treatment in ages 12 years and older.
Medication changes are summarized in Tables 4 and 5. Notably, 45 of 80 patients (56%) underwent a change in acute medication regimen when transitioning care to the adult headache clinic. Of acute medications, triptan changes were the most common alterations. Twelve of the 17 patients (70%) who stopped a medication stopped a triptan, whereas 21 of the 40 patients (51%) started a triptan at their first adult headache clinic visit. Within triptans, rizatriptan was both the most commonly stopped and most commonly started medication. Changes in nonsteroidal anti-inflammatory drugs also occurred, with 6 of 17 (35%) stopping ibuprofen, naproxen, or indomethacin whereas 8 of 34 (23%) started diclofenac or acetaminophen.
Changes in Acute Headache Medication Regimen.
Abbreviations: FDA, US Food and Drug Administration; NSAIDs, nonsteroidal anti-inflammatory drugs.
FDA approval for migraine in children ages 6 and above.
FDA approval for migraine in children ages 12 and above.
Changes in Preventive Headache Medication Regimen.
FDA approval for migraine in children ages 12 years and older.
Changes in preventive medication regimens occurred even more frequently, with 54 of 80 patients (68%) undergoing a change in preventive medication regimen including 27 of 80 (34%) who stopped medications and 50 of 80 (63%) who started them. Antidepressants were the most stopped medication on transition to the adult clinic (10/27, 37%), followed closely by antiseizure medications (8/27, 29%). OnabotulinumtoxinA (onabotA) was the most frequently started medication (16 of 50, 32%) in patients’ first visit to the adult headache clinic. The other categories of medications were added at lower rates, including nutraceuticals (13/50, 26%), antidepressants (7/50, 14%), antihypertensives (6/50, 12%), and antiseizure agents (6/50, 12%).
Discussion
Our case series describes the transition of care for pediatric patients with headache disorders from pediatric neurology providers to the adult headache clinic. The vast majority of patients transitioning to the adult headache clinic were female, consistent with demographics of chronic headache disorders. 7 Notably, males present at earlier ages on average with pediatric migraine, usually between 10 and 14 years old, whereas females are diagnosed often between ages of 14 and 20 years. 8 Males may be more likely to outgrow their migraines and thus avoid the need for clinic transition. 9
When evaluating the common diagnoses in pediatric and adult headache settings, we observed that many patients underwent a change in their diagnosis at establishing care with the adult headache clinic. In population studies of children and adolescents with a new diagnosis of headache, nearly 4 of 5 patients were given an undifferentiated headache diagnosis (eg, chronic daily headache). 10 In our cohort this proportion was smaller but still significant, with roughly 30% of pediatric patients having a non–ICHD-3 diagnosis. On transition to the adult clinic, we noted that the diagnosis of chronic daily headache was changed to a more specific diagnosis, like chronic migraine or medication overuse headache, in all but 2 cases. This tendency to change diagnosis likely stems from recent work illuminating the diagnosis of chronic daily headache having underlying migrainous or tension-type features that better characterize the disease course. 11 Importantly, recent joint guidelines from the AAN and AAP emphasize the importance of establishing a specific headache diagnosis to guide treatment. 12 The adult headache center is composed solely of board-certified headache medicine specialists who may be comfortable with narrower diagnoses than general pediatric neurologists; increasing familiarity with primary headache diagnoses in pediatric practice may improve treatment outcomes for younger patients, and ease their transition to adult care without need for diagnostic reevaluation.
Our analysis encompasses transition not only from pediatric to adult neurologic care, but also from general to subspecialty neurologic care. The aforementioned changes in diagnosis between pediatric and adult clinics may reflect level of provider experience in caring for headache disorders. Such experience begins in residency training. In adult neurology training, program requirements are vague 13 and this ambiguity lends to variable exposure to headache medicine during training. A recent survey of US neurology residency program directors and chief residents reported only 12% of programs offering more than 4 weeks of required headache clinic rotation, with the vast majority offering 4 weeks or less of exposure. 14 Child neurology residency training is similarly vague with requirements for subspecialty exposure 15 and the lack of uniform exposure to pediatric headache during training may similarly lead to difficulty in diagnosing and managing primary headache disorders.
As our study spanned almost a decade, the changes in diagnosis may also reflect changes in diagnostic paradigms. The release of the third edition of the International Classification of Headache Disorders in 2018 altered the diagnostic criteria for various primary headache disorders. 16 Notably it created a new entry for chronic migraine, as opposed to categorizing as a complication of migraine, and relabeled many other primary and secondary headache disorders. Outside the headache features themselves, the pediatric patient's ability to describe symptoms impacts diagnoses. Younger patients may experience difficulty expressing their symptoms, leading to a more generic diagnosis. 17 As the patient grows older, the ability to explain symptoms improves and could lead to a more specific diagnosis when they then establish with the adult headache center. When analyzing the changes made in medication regimens during transitions in headache care, one major factor influencing these changes is age-related limitations when prescribing treatment. Age restrictions exist for both acute and preventive medication regimens in pediatric headache. In the realm of acute migraine treatment, rizatriptan's approval from the US Food and Drug Administration (FDA) starts at age 6 years but 3 other triptans—sumatriptan, zolmitriptan, and almotriptan—are approved starting at age 12. Data on acute migraine medication use in children is limited. A Cochrane review of medications used for acute pediatric migraine treatment included 27 studies, 3 of which addressed efficacy of triptans vs placebo in patients younger than 12 years. 18 Interestingly, around 12% of our patients were prescribed non–FDA-approved rescue medications like ubrogepant, rimegepant, and naratriptan as of their final pediatric neurology visit. The lack of data in pediatric acute migraine control likely contributes to the use of off-label therapies and variation in prescribing patterns for acute migraine treatment between providers.
Similarly, preventive migraine therapies are limited because of age restrictions and side effects, in addition to scant mixed evidence for their use. In the most recent joint American Academy of Neurology (AAN) and American Academy of Pediatrics (AAP) guidelines for prevention of pediatric migraine, many included studies demonstrated high placebo response rates, making definitive recommendations difficult. 19 Most often, pediatric neurology practitioners turn to medications like topiramate or amitriptyline. Topiramate is the only FDA-approved medication for migraine prevention in adolescents and has level A recommendation for migraine prophylaxis in adults by the AAN guidelines. 20 Amitriptyline is still used off-label for both adolescent and adult migraine prevention and is considered a level B medication by AAN guidelines. 20 Together, these 2 medications comprise half the pediatric preventive prescriptions in our cohort; however, their efficacy in pediatric patients remains unclear following head-to-head analysis via the Childhood and Adolescent Migraine Prevention (CHAMP) trial, 21 and of note, the majority of patients recruited to the trial had episodic migraine, making generalization to our population difficult as most transitioning have some form of chronic headache disorder.
Pediatric headache treatments often rely on off-label medication use. The off-label use of medications for migraine in pediatric populations, especially in young children and for injectables, leads to difficulties with insurance coverage, presenting yet another barrier to care. Often use of non–FDA-approved medications requires more time of the pediatric neurology practitioner to obtain the medication in question. Clinic size and degree of ancillary support may influence how quickly and effectively practitioners can get medications to their patients.
Another preventive medication infrequently used in the pediatric neurology setting but started on transition to the adult headache clinic was onabotulinum toxinA (OnabotA). OnabotA currently carries FDA approval for chronic migraine prevention in patients 18 years of age or older; however, it is frequently used off-label in the clinical setting for adolescents with chronic migraine. The available data on safety and efficacy for onabotA in pediatric migraine mostly lies in observational studies; while safety has been well-established, attempts to demonstrate efficacy for pediatric migraine prevention have been mixed; where small randomized control trials have demonstrated significant reduction of headache days compared to placebo, larger trials have failed to do so.22–24 The inconsistency of outcomes from onabotA use in pediatric migraine may contribute to lower use in the pediatric migraine setting.
Other factors that could contribute to differences in onabotA use include provider familiarity with the medication, the ability of the patient to tolerate it, and lack of clinic or logistical support in obtaining and administering it. To the first point, prior studies of neurology residency training have indicated generally lower rates of competency in procedural headache treatments. 25 Although no similar studies exist in pediatric neurology education literature, low competency rates likely exist as well and contribute to lack of provider familiarity. Finally, the adult headache clinic has significant infrastructure to support large volumes of patients receiving onabotA. This larger-scale operation means that each additional patient who received onabotA has a small marginal cost whereas when it is performed infrequently, such as in the pediatric neurology setting, each additional patient who receives onabotA requires significantly more investment.
Beyond the trend of starting patients on onabotA, we also observed prescription patterns and changes centered around novel acute and preventive migraine therapies, namely, calcitonin gene–related peptide monoclonal antibodies (CGRP mAbs). At the final pediatric neurology visit, 5% of patients were prescribed rimegepant for acute headache management, whereas 6% were prescribed erenumab for preventive headache treatment. Use of CGRP-related medications in pediatric and adolescent migraine is currently off-label and draws from experience with adult patients; no CGRP mAb currently has FDA approval for patients younger than 18 years. A recent position statement from the American Headache Society (AHS) put forth guidelines for use and monitoring for these medications in adolescent and pediatric patients. 26 With trials assessing safety and efficacy of these medications for pediatric populations still pending, it may be several years before CGRP medications achieve FDA approval for use in pediatric populations.
Limitations and Future Directions
Our study focuses on patients who successfully transitioned from their pediatric neurology provider to the adult headache specialty clinic within our academic medical center. We offer robust observational data surrounding medication changes and timing of transition from pediatric to adult care. Our data also capture the real-time change in diagnosis and management that is a cornerstone of headache medicine; a patient's headache phenotype often evolves between visits and more generally as they grow older. Although we do not include enough patient data to capture the full extent of this evolution, our work demonstrates some external validity by reflecting real-time changes in care.
One major limitation of our data is selection bias; we employed specific exclusion criteria in creating our cohort for analysis including limiting time between pediatric and adult appointments to no more than 1 year apart. This exclusion alone neglects the patients who manage to transition with a larger gap between appointments. Additionally, we had originally sought to determine the role of race-ethnicity in transition of headache care. However, our analysis suggested that our sample size was insufficient for this facet of study, and we will pursue this evaluation with future work. Finally, generalizability of our population to other headache patients transitioning care is very difficult, as barriers may be different for patients obtaining care in community practices across and even outside the state of California. Practice patterns may also be different at nontertiary academic headache centers.
Our study highlights medication changes made on transition from pediatric to adult headache care. A natural next step for further study could include surveying a cross-section of this cohort to elucidate possible specific barriers that impacted ability to transition care. Ultimately, such work could lead to streamlined transition of care for patients with headache from the pediatric to adult neurology clinic settings, further expanding on the work done by Orr et al 4 toward this regard.
Conclusion
In this study, we investigated the extent of changes made in diagnosis or treatment of headache disorders in patients transitioning care from pediatric to adult headache practitioners within our academic center. The observation that more than half of the 80 patients in our cohort had a change in either diagnosis and/or treatment highlights the significant impacts transition of care can make in management for patients with primary headache disorders. Further studies are warranted to understand barriers to transition for patients with primary headache and the effectiveness of changes made on transitioning to adult subspecialty care.
Footnotes
Acknowledgments
None.
Author Contributions
BA: Conceptualization, data analysis and interpretation, manuscript drafting and revision. LSM: Supervision, data curation and analysis, manuscript revision.
Authors’ Note
Benjamin Africk is also affiliated with the Division of Child Neurology, Lucile Packard Children's Hospital, Palo Alto, CA, USA.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Ethical Considerations
This study received ethical approval from Stanford University School of Medicine IRB (approval #76504) on July 23, 2024.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.
