Health-care transition from a child-centered to an adult-oriented health system is a planned process aimed at ensuring continuity of care and patients’ adherence to medical care, with an emphasis on promoting active involvement of the patients, whenever possible. The lack of a structured transition plan can lead to disruption of health care, higher emergency room and hospital visits, higher health-care costs, and poor medical compliance. Similar to all pediatric patients with special needs, goals for transitioning the care of headache patients include development of self-care skills by the patient, efficient communication of medical history between providers, engaging patients and parents in decision making, setting expectations, and informing patients about practice differences.
Transitioning to adult care can be very challenging for youngsters with migraine and other headache disorders. The timing of transition occurs at a vulnerable time of development for the patient, when the triggers, features, and severity of headache are often in flux. Early diagnosis, treatment, and anticipatory guidance in this headache population, with a directed understanding of their unique needs and concerns, are crucial in facilitating the transition of patients into the adult health system. Since aggressive treatment of new-onset headache in adolescence may lead to disease modification, a successful transition of care may improve patient outcomes, although more directed studies are needed to fully understand this transition period specifically in patients with challenging headache disorders.
Headache specialist
For the headache specialist, gaining knowledge about commonly occurring changes in the adolescent headache condition and overall health will help inform best clinical practices. Long-term prognostic indicators of increased headache frequency in adolescents include female gender, decreases in social interaction, and depressive symptoms. Furthermore, the onset of sexual activity and gynecologic conditions may prompt usage of oral contraceptives in female headache patients and necessitate conversations about the risks and benefits of estrogen-containing medications in patients with migraine with aura or in those who smoke. Therefore, incorporating a comprehensive social history and screening for depression along with other migraine comorbidities (such as anxiety and substance use disorder) during care visits is crucial to understanding prognostic factors, guiding headache treatment, and providing a more comprehensive management of headache patients.
In addition to understanding the clinical changes affecting adolescent patients with headache disorders, education on the process of transition for headache specialists helps prevent common pitfalls and gaps in care. Common barriers to a successful transition include (1) communication gaps between providers, (2) a lack of health-care resources to support care coordination, (3) a lack of patient engagement or uneasiness with adult care, and (4) the inability to access appropriate providers with the capacity to provide comprehensive services. Although there is an increased recognition of the importance of transition to adult care, there is limited evidence on the needs of migraine and headache patients as they transition into adults; however, many of the same principles can be drawn from studies on transitional care for children with special needs. To overcome these barriers, we recommend the adoption of the six core elements of transition developed by the Maternal and Child Health Bureau and The National Alliance to Advance Adolescent Health.
Six T’s of transitioning health care of headache patients
Clinical recommendations for transition of health care of headache patients based on the six core elements of transition are as follows :
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Transition policy
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Formalize the transition criteria (i.e., setting the ideal and ceiling ages for transfer, emotional maturity, and independence). Develop pipelines and criteria to transition patients either to specialty clinics, local neurologist, or back to primary care providers. Identify adult providers who are comfortable with providing transitional care or who are receptive to learning about this unique patient population.
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Identify patients ready for transition and introduce the topic of transition early, around 12 years of age, or soon after diagnosis. Provide patients with formal transition policies.
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Anticipate insurance gaps and legal issues including privacy changes occurring on the day a patient turns 18 years old, which requires obtaining consent from patients for release of health information to parents and caregivers.
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Tracking and monitoring:
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Develop a mechanism for tracking progress through the six core elements of transition to monitor progress at individual and institution levels using electronic health records and standard documentation or flowsheets.
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Transition readiness:
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Formal assessment of transition readiness, or formally using the transition readiness assessment questionnaire (TRAQ), or youth and young adult assessment tools ( https://www.gottransition.org/resources/index.cfm ).
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Informal assessment of independence by observation of parent–child interactions and by communication with other care providers, including psychiatrists and therapists.
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Discussion and implementation of self-care skill development, including calling in prescriptions, feeling comfortable speaking to the physician regarding symptoms, maintaining a headache diary, taking medications without prompts from parents, scheduling appointments, and handling electronic communication.
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Transition planning:
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Reach out to the patients, their caregivers, and other providers to identify the patient’s strengths and weaknesses.
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Submit transfer packages to adult providers with a medical summary, emergency plan, legal documents, psychosocial concerns, and final readiness assessment. See a sample headache medical transfer packet ( Fig. 1 ) created by the consensus of pediatric headache neurologists across North America.
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A medical summary includes past providers, past medication trials, relevant past medical history, headache history “road map”, and completed diagnostic tests
Fig. 1
Sample headache medical transfer packet.
From Orr SL, et al. The development of the medical transfer packet for transition of care of the pediatric patient with headache. Headache 2020;60:2589–2591, https://doi.org/10.1111/head.13948 .
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Emphasize strengths as well as skills/tasks requiring assistance.
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Discuss complicated cases by telephone or in person including a joint agreement about emergency care prior to adult care visit. Patients, caregivers, and providers should know where to go in an emergency.
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Develop a plan for managing health care of college students who are away during the year, but are back home during holidays and school breaks.
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Before the visit, contact from the adult team should ideally address insurance changes, self-care practices, and psychosocial needs before the visit.
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Transfer of care:
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Welcome patients and orient them to adult care, focusing on concerns and similarities/differences between pediatric and adult care
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Discuss confidentiality, access to information, shared decision making, and best routes for communication.
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Subsequent visits should work on gaps in self-care noted from the pediatric team.
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Transition completion:
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Follow-up evaluation with patients to ensure completion of transfer, and review short-term outcomes and transition experience within 6 months of transfer.
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Self-management and self-advocacy skills and behaviors often continue to develop after the initial 6 months after transfer.
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Implementation of a planned and well-considered transition process leads to improvements in adherence to medical care and patient experience, and is thus crucial for the ongoing care of these patients.
Primary care providers
Pediatrician
The unique role of a pediatrician in health-care transitions arises from the longitudinal relationship pediatricians have with patients and their caretakers. Starting discussions early about anticipated transitions and life goals with patients and their caretakers fosters a family-centered approach. The American Academy of Pediatrics/American Academy of Family Physicians/American College of Physicians (AAP/AAFP/ACP) guidelines recommend starting the transition process by notifying patients of the transition policy as early as age 12 years. Asking parents about their thoughts on their child’s future and initiating discussions with children about their own life goals and plans can be instrumental in providing a framework and in guiding expectations for transitions. As withdrawal from social activities can be a risk factor for poor long-term headache prognosis, encouraging engagement in the community may be beneficial for transitioning patients and their families.
Pediatricians may learn more about options and opportunities for their patients by reaching out to academic headache centers and patient advocacy groups. A few academic centers have established transition programs for headache patients, although more are needed. In addition, partnering with adult primary care providers is critical for a successful transition.
Adult care provider
Adult primary care providers play an instrumental role in the well-being of their patients by providing health care for patients with chronic medical conditions, including those with primary headache disorders. However, the median age of many adult care practices is over 40 years of age. Young adults often represent only a small proportion of adult patient panels, making it challenging for adult providers to learn and take into account the unique needs of adolescents and young adults.
On the basis of the AAP/AAFP/ACP guidelines, we recommend that adult providers develop a plan to implement the six core elements of transition ( Table 1 ). Materials to aid with plan development and implementation are available at https://www.gottransition.org . As a corollary to the transition readiness assessment skill tool for youth, a transition readiness assessment for young adults is available for adult providers. Given the clinical and financial challenges for adult primary care providers and lack of care coordination infrastructure, it may be useful to have a self-selected group of physicians in a practice to care for young adults and to coordinate care with pediatric providers.
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