Adult tertiary epilepsy centers often lack the resources to manage young adult patients who are making the transition from pediatric centers, according to a study published in the October issue of Epilepsia.
“These transitioned patients require more resources and services than other young patients with epilepsy” who are receiving care in the community, said Felippe Borlot, MD, and colleagues. In addition, adult neurologists, “even those specialized in epilepsy, may not feel that they are adequately prepared to diagnose and treat part of this complex population.”
For the retrospective study, Dr. Borlot, an epilepsy fellow at the University of Toronto, and his colleagues reviewed the records of all young adults, ages 18 through 25, with childhood-onset epilepsy seen during a six-year period at a single adult tertiary epilepsy care site. The researchers reviewed patient demographic data, etiologies, and treatment regimens before sorting patients into two groups.
The first group of 170 patients had been referred from a pediatric epilepsy tertiary care center. The second group of 132 patients was age-matched with that group and consisted of people referred by community physicians, including pediatric neurologists, to the adult tertiary center. The mean age for the first group was 21.9, and the mean age for the second group was 23.2.
The first group had earlier seizure onset, longer epilepsy duration, more symptomatic etiologies, epileptic encephalopathy, and cognitive delay. The first group also required more care from other specialists, as well as polytherapy, epilepsy surgery, a ketogenic diet, and a vagus nerve stimulator. Patients from tertiary centers present more complex health care needs and require more resources than age-matched patients from the community, said Dr. Borlot and his coinvestigators.
The researchers also surveyed 86 adult neurologists and 29 pediatric neurologists. On a scale of 1 (not comfortable at all) to 5 (very comfortable), the neurologists were asked to rate their comfort level in dealing with several types of epilepsy. The survey also asked how the neurologists felt about treating attendant issues such as intellectual disabilities and autistic features.
The survey results, although not validated, showed that adult neurologists had less confidence diagnosing and treating more severe forms of childhood-onset epilepsies, as well as epilepsy associated with cognitive delay.
The study lacked data validating a successful transition from pediatric to adult care. Also, it did not include patients who were not assessed in the 12 months before the study, meaning that it was not possible to determine the percentage of patients lost to follow-up. Nevertheless, the investigators concluded that the data were useful because no previous evaluation of transition of care in the epileptic setting was available.
Dr. Borlot and his coauthors concluded that transition of care for patients with epilepsy may be enhanced by efforts to “make childhood-onset epilepsies part of adult neurologists’ training and certification requirements.”
—Whitney McKnight