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Epilepsy Transition Care Gap in Young Adults

Epilepsy Behav; ePub 2018 Aug 25; Baca, et al

Only one-third of young adults with active epilepsy at transition reported having epilepsy care transition discussions with healthcare providers before the age of 18 years, according to a recent study.Researchers utilized data from The Connecticut Study of Epilepsy, a prospective, community-based study of newly diagnosed childhood-onset epilepsy with 613 children (onset <16 years; recruited: 1993–97). During the final exit interview, 308 young adults aged ≥18 years (or parent-proxies) were asked, “Before you turned 18, did your doctors or other epilepsy care providers talk with you about how your epilepsy care needs might change as you get older?” Researchers found:

  • For young adults with childhood-onset epilepsy (n=308; mean age: 24, SD = 4.0; mean age of epilepsy onset: 5.4 years, SD = 3.7), only 15% responded “yes” to having had a “transition discussion.”
  • Of those with “active epilepsy” (n=130; seizure-free <5 years or on an antiseizure medication within 2 years of their 18th birthday) upon attaining the age of majority (18 years), 40/130 (~ 31%) young adults had “transition” discussions, compared with 7/178 (4%) of those with “inactive epilepsy.”
  • Self- (n=95 active epilepsy) and proxy-reports (n=35 active epilepsy) of “transition” discussions were comparable (31%).

Citation:

Baca CM, Barry F, Berg AT. The epilepsy transition care gap in young adults with childhood-onset epilepsy. [Published online ahead of print August 25, 2018]. Epilepsy Behav. doi:10.1016/j.yebeh.2018.06.052.

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