Optimizing the Transition from Pediatric to Adult Care in Headache Medicine

Headache disorders are prevalent in both children and adults with migraine being the most common type seen in primary care settings. In children, these disorders contribute to a considerable financial burden, accounting for 18% of all pediatric emergency department visits.¹ Whereas many children experience remission, only 18% of children with moderate to severe headache achieve complete headache resolution into adulthood.² As individuals transition out of pediatric care, many fail to establish continuity with providers equipped to manage chronic headache disorders and associated symptoms. In chronic conditions such as rheumatologic disorders, congenital heart disease, and diabetes, structured transition programs have been established to ensure continuity of care. However, headache medicine lacks a standardized approach. As a result, many young adults with recurrent headaches face gaps in care, and unmanaged symptoms may lead to reduced quality of life. Implementing a structured transition process for people with recurrent headaches can improve continuity of care, enhance self-management, and lead to better health outcomes.^2,3

Bearing this in mind, there has been increasing recognition of the importance of ensuring that children and adolescents have established care upon reaching adulthood. For medically complex cases, or children or adolescents with multifactorial disease processes, the importance of health transitioning has been a recognized priority. In recent years, there has been a widened focus to include transition of care in a broader sense.³ The American Academy of Neurology and Child Neurology Foundation recognize the importance of successful transition of care to prevent disruption in care, negative outcomes, and poor quality of life.^3,4 A headache-specific adapted version of the Child Neurology Foundation principles was developed in an effort to guide providers on how to support patients through the transition of care process (Table 1). The adult neurologists who will be assuming care also require resources regarding the transition of care. There is a paucity of recommendations for adult clinicians receiving adolescents or young adults (AYAs) into their practice. Table 2 shows recommendations specific to the adult headache practitioner who is receiving a patient transitioning into adult care.⁵

Clinician Process of Health Care Transition

The process of transition needs to start early and be discussed often with AYAs (ages 12 to 26 years). This age group accounts for 20% of the US population. Among adolescents, only 17% with special needs and 14% with no special needs receive guidance about transitioning to adult health care. There are no outcome data regarding young adults, but it is clear that there is an incremental worsening of the transition process with increasing age.^6,7 There are slight differences regarding transition processes among pediatric organizations. Transition in neurologic care is discussed here. Two broad models to approach transition include having a transition clinic with appointments to specifically address transition of care vs having a transition program with a facilitator, although in most practices the latter would not be feasible.⁷

There are multiple barriers experienced by clinicians when transitioning patients that can affect the success and timing of transition. The major barriers include lack of medical education and training on transition of care, limited resources, lack of engagement of patients or unwillingness to enter into the adult health arena, and infrastructure gaps (eg, lack of coordinated communication or standardized process).⁸ To address these challenges, Orr et al⁹ developed a medical transfer packet for the pediatric patient with headache; although not widely available, there is hope this method will become standard of care in the headache community. In the Box, we provide a checklist of recommended materials to include in the transfer packet.

Organizations have been advocating for increased support around health transition practices. This effort resulted in new recognized coding and billing terms as of 2023. The International Classification of Diseases, 10th revision diagnosis code Z71.87, “Encounter for pediatric-to-adult transition counseling,” can be used as either a primary or secondary code. The standard evaluation and management encounter is not required for the use of this code, which means that clinicians can have a dedicated visit for transition of care.¹⁰ Additional codes that can be helpful in this population include Current Procedural Terminology code 96127 for “brief emotional/behavioral assessment” if surveys (eg, patient health questionnaire–9 [PHQ-9] for depression or General Anxiety Disorder–7 scale [GAD-7] for anxiety) are used. If using transition readiness assessments, Current Procedural Terminology code 96160 can be applied for “patient-focused health risk assessment instrument.”¹⁰

Clinical Approach to Adolescents or Young Adults With Headache 

In every medical specialty, a thorough patient history is essential for making an accurate diagnosis and, in turn, providing safe and effective treatment. There are specific nuances in the approach to obtaining a history from AYAs who are no longer under the care of their pediatrician, pediatric neurologist, or pediatric headache specialist. This population is developing a sense of independence and facing the challenges and responsibility of life which can affect their emotional and physical well-being. When screening for mental health and psychiatric comorbidities, it is important to include conditions such as major depressive disorder with suicidal ideation and generalized anxiety disorder.¹¹ Other common comorbid conditions include abdominal pain, constipation, and irritable bowel syndrome, which have been shown to have a bidirectional relationship with stress and physical symptoms.¹² Psychosocial stressors including academic or work pressures and social challenges can also have a negative impact on headache management.¹³ Therefore, incorporating biopsychosocial interventions is essential for improving outcomes in this vulnerable population.^12,13

Discussing a patient’s relationship with food in an unbiased approach allows for screening for disordered eating, as bulimia nervosa and anorexia nervosa have become increasingly more common in the adolescent population.¹⁴ It is imperative to address sleep habits as well as how the negative effects of smartphone usage could translate to less sleep or delayed onset of sleep and consequently contribute to headache burden.¹⁵ All individuals must be assessed for safety, particularly if there is a history of trauma or mental or physical abuse in their home and personal relationships.^16,17

The impact of migraine can be assessed in different ways. The Migraine Disability Assessment (MIDAS) can be easily implemented for those already used to completing the pediatric version (Pediatric Migraine Disability Assessment [PedMIDAS]).¹⁸

Treatment Considerations

One of the key points to understand in transitioning from pediatric to adult headache medicine is the augmentation of the clinician’s armamentarium in treating headache and facial pain. In pediatric neurology, for episodic migraine or tension-type headache, one can start with NSAIDs as rescue medication. For migraine, triptan medications, which are approved for patients age ≥6 years, can be considered.¹¹ Prevention approaches for children and adolescents have changed since the CHAMP study (Childhood and Adolescent Migraine Prevention, NCT01581281), which was stopped early for futility when all groups—placebo, amitriptyline, and topiramate—experienced meaningful reduction of headaches.¹⁹ The 3-year follow-up study also showed sustained positive outcomes in both headache days and migraine disability, with <10% of participants remaining on prevention medications.²⁰ Often, pediatric headache clinicians lead with nonpharmacologic treatments including a combination of nutraceuticals, biobehavioral approaches, neuromodulation, and healthful habits.²¹ When traditional pharmacologic treatment is needed, medications span drug classes and can be tailored to the individual’s unique clinical scenario. For example, a beta-blocker such as propranolol may be useful in some patients; in others, such as individuals with asthma, the antiepileptic drug topiramate may be considered. Other classes for consideration as daily preventatives include antidepressants such as amitriptyline. OnabotulinumtoxinA can also be used for chronic migraine.¹¹ Drug trials for calcitonin gene-related peptide (CGRP) antagonists or CGRP monoclonal antibodies are ongoing in the pediatric headache community. Medical devices to treat migraine including remote electrical neuromoduators and transcutaneous electrical nerve stimulators, which have Food and Drug Administration clearance in pediatric and young adult age groups, can be considered.²¹ After age 18 years, many more interventions become available with Food and Drug Administration and insurance approval for adults such as CGRP antagonists or CGRP monoclonal antibodies. Cognitive behavioral therapy is a cornerstone of headache treatment but becomes much more accessible when attempting to find an adult counselor vs a pediatric counselor or psychologist.²² 

Legal and Insurance Considerations

Minors in the United States generally require parental or guardian consent for medical decisions but exceptions exist. Emancipated minors due to marriage, military service, or financial independence can make health care decisions autonomously. The mature minor doctrine recognized in some states allows adolescents aged ≥12 years to consent to certain treatments if the adolescent is deemed cognitively capable. Federal and state laws also permit minors to access reproductive health, mental health, and substance use services without parental consent. Emergency medical care is protected under the Emergency Medical Treatment and Active Labor Act , ensuring treatment regardless of parental involvement or insurance status.^23,24 It is important to ask AYAs about their relationship with their caregiver, and when possible, to honor their privacy. As AYAs become more independent, they should be tasked with increasing autonomy of care. Clinicians should encourage AYAs to manage their own medications within reason; make their own calls to clinic and help set up their own appointments. These tasks will help prepare individuals for eventual transition.³

Adolescent health care coverage depends on age and dependency status. Per the Affordable Care Act, minors remain on parental insurance until age 26 years; Medicaid and the Children’s Health Insurance Program cover low-income individuals up to age 19 years. Foster youth qualify for Medicaid until at least age 26 years, but frequent relocations often disrupt access to care. Emancipated minors, although legally independent, may lack financial resources and stable insurance, posing challenges in obtaining necessary care. Health care providers must navigate these legal and policy frameworks to ensure adolescents receive appropriate and confidential medical services.^23,24

School and College Considerations

AYAs with migraine can struggle in school and college; therefore, accommodations are often necessary to allow them to reach their full academic potential. The goal is for students to stay in school even if they have substantial migraine disability, which makes accommodations essential. In the kindergarten through 12th grade school years, accommodations can be put in place with a 504 plan. This is developed in partnership among the student, their caregiver, and the school. 504 plans are designed around a medical diagnosis (eg, migraine). The formal request to create a 504 plan should be made in writing and should include a timeline within which the school must comply. Reasonable accommodations to consider include having immediate access to medications to treat headache, extended time on assignments, a distraction-free testing environment, written material in place of material on screens, and being able to hydrate or have a snack in the classroom. 

The 504 plans do not automatically carry over to the college setting; however, the college office of disability services can guide a student on what accommodations can be supported. Each school may have their own required forms for the student or treating provider to fill out. Housing accommodations to consider include close proximity to class and the type of room setup (eg, sink, number of roommates or suitemates) to accommodate for symptom management (eg, nausea, light and sound sensitivity) during headache episodes. Priority registration can be requested to allow students to select schedules and class times to meet their health needs. If the college is far from home and the student’s medical home, it would be helpful to establish care with the campus student health clinic, which can help coordinate care in case of emergency and may offer rescue treatments. The student may decide to establish a relationship with a neurologist closer to campus for office or procedural appointments or see their established team when they return home for breaks. Advance planning with an action plan for status migrainosus is preferred, involving the resident advisor if possible, to determine where to receive rescue treatment (clinic, urgent care, or emergency department) and plan for transportation. 

Conclusion

Headache disorders, especially migraine, remain a leading cause of morbidity in the pediatric population. With increased awareness and expanded treatments, remission is possible. However, for individuals who continue to have headaches into adulthood, planning for long-term success includes thoughtful transition of care planning from pediatric to adult-focused clinicians. A seamless transition is key to mitigate risk of lapses in care, coverage, and treatment. By realizing that transition is not a moment but a process, we can work in unison to provide our patients with the most robust support and highest chance for success.