Safety, Awareness, and Familiarity regarding Epilepsy in Teenage Years (SAFETY): Understanding the adolescents' perspective about their disease

Rajkumar Agarwal, Riddhiben Patel, Kallol Set, Marwan Zidan, Lalitha Sivaswamy

Research output: Contribution to journalArticlepeer-review

9 Scopus citations

Abstract

Objective: The objective of this study was to evaluate the understanding of adolescent patients regarding epilepsy. Methods: The SAFETY (Safety, Awareness, and Familiarity regarding Epilepsy in Teenage Years) questionnaire (content validity index: 0.96, Flesch readability score: 66.6) was administered to 165 cognitively normal adolescents with epilepsy (85 females, mean age: 15.2. ±. 1.6. years, range: 13-18. years). The first part of the questionnaire was devised to evaluate knowledge about epilepsy and antiepileptic medications (SAFETY-K: 7 questions). The second part queried lifestyle modifications and safety (SAFETY-S: 10 questions). Female participants answered 5 additional questions related to reproductive health (RH questionnaire). Results: The correct response rate for the composite SAFETY questionnaire was 51.5%. The average rates of correct responses for the SAFETY-K and SAFETY-S questions were 47.9% and 53.9%, respectively. On univariate logistic regression analysis, factors which were significant predictors of correct responses included age (odds ratio: 1.8, C.I.=. 1.3-2.4), race (Caucasian vs. African-American; odds ratio: 3.9, C.I.=. 1.4-10.4), and employment of at least one parent in a professional occupation (odds ratio: 3.3, C.I.=. 1.1-10.3). The correct response rate did not correlate with the duration of epilepsy, extent of seizure control, number of antiepileptic medications, parental educational, or (un)employment status. The mean rate of correct responses for the RH questions amongst teenage girls was 17.4%. Conclusions: There is lack of awareness about epilepsy and its associated lifestyle modifications in adolescents with epilepsy seen at our institution. This is especially true in young adolescents, African-American patients, and those whose parents are not employed in professional occupations. Teenage girls with epilepsy appear to have limited knowledge with respect to contraception and childbearing.

Original languageEnglish
Pages (from-to)114-118
Number of pages5
JournalEpilepsy and Behavior
Volume41
DOIs
StatePublished - Dec 1 2014

Keywords

  • Adolescent
  • Epilepsy
  • Knowledge
  • Lifestyle

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