Adolescent and caregiver experiences with epilepsy

Miya R. Asato, Ranjani Manjunath, Raj D. Sheth, Stephanie J. Phelps, James W. Wheless, Collin A. Hovinga, Jesus E. Pina-Garza, Lisa S. Haskins, Wendy M. Zingaro

Research output: Contribution to journalArticlepeer-review


Epilepsy during adolescence can impede the development of psychosocial independence and typical biological maturational processes. We examined in parallel the experiences and perceptions of adolescent patients with epilepsy and their caregivers. Specifically, we focused on frequency and type of seizures, comorbid conditions, adherence to therapies, productivity, clinical and quality of life consequences of seizures, estimated use and content of seizure emergency plans, and the patient-physician relationship. Two cross-sectional online surveys were conducted among 153 adolescent patients with epilepsy and their respective caregivers. A total of 35% of adolescents indicated that they had been nonadherent to antiepileptic medications in the prior month. Adolescents scored significantly lower compared with their peers on quality-of-life measures. Adolescents and caregivers reported similarly on nearly all domains. An adolescent-centered epilepsy management program may help alleviate concerns and also help the adolescent independently manage their epilepsy as they transition into adulthood.

Original languageEnglish (US)
Pages (from-to)562-571
Number of pages10
JournalJournal of child neurology
Issue number5
StatePublished - 2009
Externally publishedYes


  • Adherence
  • Adolescent
  • Antiepileptic drugs
  • Caregiver
  • Cognition
  • Compliance
  • Epilepsy
  • Quality of life
  • Seizure

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Clinical Neurology


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