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Journal of Child Neurology
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*Caregivers
*Child Mental Health
*Epilepsy
*Teen Development
*Teen Mental Health
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Adolescent and Caregiver Experiences With Epilepsy

Miya R. Asato, MD

Children's Hospital of Pittsburgh, Pittsburgh, Pennsylvania

Ranjani Manjunath, MSPH

GlaxoSmithKline, RTP, North Carolina

Raj D. Sheth, MD

Wolfson's Children Hospital, Jacksonville, Florida

Stephanie J. Phelps, PharmD

University of Tennessee Health Science Center, Memphis, Tennessee

James W. Wheless, MD

University of Tennessee Health Science Center, Memphis, Tennessee

Collin A. Hovinga, PharmD

University of Tennessee Health Science Center, Memphis, Tennessee

Jesus E. Pina-Garza, MD

Vanderbilt University, Nashville, Tennessee

Lisa S. Haskins, MPA

Harris Interactive, Rochester, New York, lhaskins{at}harrisinteractive.com

Wendy M. Zingaro, MPA

KJT Group, LLC, Honeoye Falls, New York

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.

Key Words: antiepileptic drugs • adherence • compliance • adolescent • caregiver • epilepsy • seizure • quality of life • cognition

Journal of Child Neurology, Vol. 24, No. 5, 562-571 (2009)
DOI: 10.1177/0883073809332396
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