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Published on: September 20, 2024
Adolescent and caregiver experiences with epilepsy
Miya R Asato1, Ranjani Manjunath, Raj D Sheth
1Children's Hospital of Pittsburgh, Pittsburgh, Pennsylvania, USA.
Journal of Child Neurology
|May 2, 2009
Summary
Adolescent epilepsy impacts psychosocial development and quality of life. A patient-centered approach is recommended to improve epilepsy management and independence during the transition to adulthood.
Area of Science:
- Neurology
- Adolescent Medicine
- Psychosocial Health
Background:
- Epilepsy in adolescence presents unique challenges to psychosocial independence and biological maturation.
- Understanding the parallel experiences of adolescent patients and their caregivers is crucial for effective management.
Purpose of the Study:
- To examine the experiences and perceptions of adolescent epilepsy patients and their caregivers.
- To identify key factors affecting quality of life and adherence in adolescent epilepsy.
Main Methods:
- Conducted two cross-sectional online surveys with 153 adolescent patients with epilepsy and their caregivers.
- Assessed seizure characteristics, comorbidities, therapy adherence, productivity, and quality of life.
Main Results:
- 35% of adolescents reported nonadherence to antiepileptic medications in the past month.
- Adolescents with epilepsy reported significantly lower quality-of-life scores compared to peers.
- Adolescents and caregivers reported similar perceptions across most assessed domains.
Conclusions:
- Adolescent epilepsy negatively affects quality of life and psychosocial development.
- An adolescent-centered epilepsy management program could improve outcomes and support the transition to adulthood.
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