Oct. 26, 2021
Mayo Clinic has launched a multidisciplinary effort to help young people with epilepsy to transition to adult care. The pilot program brings together practitioners in neurology, primary care and adolescent social work to help these individuals take responsibility for managing their chronic illness — and to guide families through that process.
"Parents are so used to taking care of their children with epilepsy that the young people often don't know how to take care of themselves," says Matthew T. Hoerth, M.D., a neurologist at Mayo Clinic in Phoenix/Scottsdale, Arizona. "Going to college or moving out of your parents' house is a big change for anyone. But having a chronic illness makes that transition much more complicated."
The specific needs addressed by the pilot program include medication regimens, mental health, information about surgery if desired, vocational guidance and the transition from parental medical insurance. The pilot program serves teenagers and adults up to age 25.
"The idea is to ensure that young people have the tools they need to successfully manage a chronic disease in adulthood," says Kellie K. Kruger, M.D., a primary care physician at Mayo Clinic's campus in Arizona, who has training in pediatrics and internal medicine. "We know that the challenges go beyond epilepsy and affect a person's ability to be self-sufficient."
Bridging the chasm
Mayo Clinic epileptologists identify patients who might benefit from the pilot program. Patients' families are contacted by Nicole R. Schuren, M.S.W., L.M.S.W., program manager for adolescent and pediatric social work at Mayo Clinic's campus in Arizona, who explains the program and schedules appointments.
The appointments last about 90 minutes. Typically, Dr. Hoerth, Dr. Kruger and Schuren initially meet as a group with the young person and the person's family. Then Dr. Kruger and Schuren each meet separately with the young person and the family. All three Mayo Clinic providers then gather again with the young person and family.
"The process is a bit lengthy. But we find that it allows the necessary time to start to craft a plan for the young person's needs," Dr. Kruger says. "A successful transition to adult health requires managing not only the epilepsy and other medical conditions but also the young person's psychosocial, educational and employment needs, and the family's need for services."
Dr. Kruger might recommend follow-up visits with primary care providers or mental health specialists to address the depression and anxiety commonly experienced by young people with epilepsy. Schuren advises the family and young person on vocational rehabilitation services and community resources for which the young person might qualify, and the importance of long-term planning to ensure the person's independence and well-being.
"These are often difficult and emotional conversations," Schuren says. "The goal for transition readiness is for families to feel as though they and their child are landing on a cushion in the adult world."
Some patients wish to discuss surgical options for treating epilepsy. "Surgery that could potentially cure their epilepsy is a matter of big interest for patients in this age range," Dr. Hoerth says. "As these individuals mature, they are looking to significantly change the trajectory of their lives."
Mayo Clinic is collecting data on the pilot program's outcomes. "We're seeing good preliminary results, not just in the patients becoming more confident but also in the parents gaining confidence that their children can leave home and be successful," Dr. Hoerth says.
That success is facilitated by Mayo Clinic's expertise in pediatrics as well as adult neurology and other medical specialties. "The adult providers on our team understand the pediatric model of care. We're bridging that chasm," Dr. Kruger says. "Offering this program in an adult-centered institution but through a pediatric lens is a great asset to our patients. This program helps us to collaboratively address all our patients' needs."