Growing up: Transitioning to adult care

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 :

• Transition policy

  • 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.

  • 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.

  • 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.

• Tracking and monitoring:

  • 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.

• Transition readiness:

  • 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 ).

  • Informal assessment of independence by observation of parent–child interactions and by communication with other care providers, including psychiatrists and therapists.

  • 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.

• Transition planning:

  • Reach out to the patients, their caregivers, and other providers to identify the patient’s strengths and weaknesses.

  • 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

    

  • Emphasize strengths as well as skills/tasks requiring assistance.

  • 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.

  • 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.

  • Before the visit, contact from the adult team should ideally address insurance changes, self-care practices, and psychosocial needs before the visit.

• Transfer of care:

  • Welcome patients and orient them to adult care, focusing on concerns and similarities/differences between pediatric and adult care

  • Discuss confidentiality, access to information, shared decision making, and best routes for communication.

  • Subsequent visits should work on gaps in self-care noted from the pediatric team.

• Transition completion:

  • Follow-up evaluation with patients to ensure completion of transfer, and review short-term outcomes and transition experience within 6 months of transfer.

  • Self-management and self-advocacy skills and behaviors often continue to develop after the initial 6 months after transfer.

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.