Genetic Counseling Improves Caregiver Empowerment in Early-Life Epilepsy Clinic
Abstract number :
1.415
Submission category :
13. Health Services (Delivery of Care, Access to Care, Health Care Models)
Year :
2018
Submission ID :
502736
Source :
www.aesnet.org
Presentation date :
12/1/2018 6:00:00 PM
Published date :
Nov 5, 2018, 18:00 PM
Authors :
Rebecca Hicks, Emory University; Lisa Raman, Children's Healthcare of Atlanta; Beth Sheidley, Harvard University; Anne T. Berg, Ann & Robert H. Lurie Children's Hospital of Chicago; and Sookyong Koh, Emory University
Rationale: Pediatric neurology clinics have widely adopted the practice of microarray and gene panel testing for patients with infantile-onset epilepsy. However, genetic counseling has not been established as an integral part of the testing process and little research has explored the potential benefits of genetic counseling to caregivers. To address this gap, we prospectively evaluated genetic counseling outcomes in this patient population. Methods: Questionnaires were completed at baseline and post-genetic counseling. We assessed situational anxiety (State-Trait Anxiety Inventory Form Y-1; STAIY-1), self-efficacy related to medical management (General Self-Efficacy Scale; GSE), perceived stigma (modified Parent Stigma Scale, termed Targeted Early-Life Epilepsy Stigma Scale; TELES), and empowerment (Genetic Counselling Outcome Scale; GCOS24) in caregivers of children with infantile-onset epilepsy. Paired t-test or Wilcoxon signed-rank test assessed change in scores from baseline to post-counseling. Bivariate analyses assessed whether caregiver sociodemographic and patient clinical variables correlated with baseline measure scores. Results: A total of 18 caregivers enrolled in the study; 16 completed both baseline and post-counseling questionnaires. Caregiver empowerment (GCOS-24, p = 0.035) was significantly higher post-counseling. Perceived stigma (TELES, p = 0.053), situational anxiety (STAIY-1, p = 0.283), and self-efficacy (GSE, p = 0.875) did not differ significantly pre- and post-counseling. The mean caregiver age was 31.56 (29 - 43). Higher caregiver age was associated with higher baseline empowerment (Pearson’s r = 0.578, p = 0.012). Caregivers with a family history of seizures or epilepsy had statistically significantly lower levels of self-efficacy (30.33 ± 2.16) at baseline compared to caregivers without a family history of seizures or epilepsy (34.33 ± 4.05), t(15.82) = 2.73, p = 0.015. Conclusions: Genetic counseling is beneficial for caregivers of patients with infantile-onset epilepsy, supporting the integration of genetic counselors in the diagnostic process for this patient population. Funding: Goizueta Foundation