What to know about transitioning a child from pediatric migraine care to adult migraine care
If you spend any time in migraine support groups, you wouldn’t be surprised to hear that migraine affects people of all ages, including 11% of children. But what happens when those children become teenagers and then adults? To provide help and guidance for people in these sorts of transitions, the American Migraine Foundation recently hosted a webinar titled “Transitioning to Adult Migraine Care,” where headache specialist Dr. Hope O’Brien discussed best practices for adolescents and young adults living with migraine.
Before running her own practice, Headache Center of Hope, Dr. O’Brien developed the Cincinnati Children’s Hospital’s young adult program to help adolescent and young adult patients transition into adult care.
The transition from adolescent to adult is critical, especially for those affected by migraine. Research studies suggest that discussions with patients, families and providers should start when the patient is as young as 13 years of age. This allows for both patient and caregiver to understand all that is necessary for transition.
Dr. O’Brien breaks down transition of care into three phases: transition planning, patient education and transfer readiness.
In transition planning, the goal is to expand the patient’s personal knowledge of their condition and introduce skills for self-advocacy. A key part of this is ensuring that your child understands their diagnosis. This matters whether it’s migraine, chronic migraine or another headache disorder. It is also important that they know how to treat their migraine, whether through abortive medications or preventive measures like lifestyle modification or cognitive behavioral therapy. Self-advocacy means that your child is able to take ownership over their own self care. It also means feeling confident in their ability to make informed decisions.
Ask your pediatrician to address your child directly instead of giving their attention solely to the caregiver. By doing so, the clinician is able to gain understanding of the patient’s knowledge base and be able to directly communicate the expectation that they take greater responsibility for their health.
Finally, you should dedicate a large part of this phase to finding an adult provider. Dr. O’Brien recommends identifying a provider one to two years before transitioning to adult care. Patients and caregivers may search on their own using resources like AMF’s Find a Doctor tool, or seek recommendations from others, including their pediatric provider. If your child is moving far away for school or work, identifying a specialist in their new city can avoid a disruption in headache management. Dr. O’Brien reminded viewers, however, that telemedicine has made migraine care more accessible than ever, even in spite of geographic limits.
Since we know that many children continue to have migraine into adulthood, caregivers and providers should ensure patients receive the appropriate information for successful transfer of care as they enter adulthood.
Patient education is defined as having a basic understanding of the healthcare system, including how medical coverage with insurance works. This is important, especially if there is an upcoming change in coverage, which could hinder the process of health maintenance. During this phase, some key topics to cover with your child are how their specific insurance plan works and how to pick a provider who is in network. In addition, your provider should help supply age-appropriate documentation summarizing key points about your child’s diagnosis.
Transition readiness is a measure of whether a patient is ready to be in control of their own care. For example, are they able to book and attend medical appointments when needed? Can they accurately and clearly explain their health conditions to a medical professional? The Transition Readiness Assessment Questionnaire, also known as TRAQ, is considered the best validated transition readiness tool and is used by providers to identify areas where a patient may not feel ready to transition.
This questionnaire has five different categories: managing medications, appointment keeping, tracking health issues, talking with providers and managing daily activities. It’s important that the patient fills this out—not the parents. The survey helps identify areas of weakness that the family, provider and patient can work on to prepare for the transition.
Finally, feel free to start your own “transfer packet” for your pediatrician to review and update. It should be brief and include your child’s diagnosis, medication history and any relevant labs, tests or imaging.
The American Migraine Foundation is committed to improving the lives of those living with this debilitating disease. For more of the latest news and information on migraine, visit the AMF Resource Library. For help finding a healthcare provider, check out our Find a Doctor tool. Together, we are as relentless as migraine.