Abstracts

Rationale: Epilepsy affects 1% of children worldwide. Approximately 20-40% of children diagnosed with epilepsy do not respond the antiepileptic drug treatment. Moreover, children face several problems in the area of learning, development, behavior, and sleep. This study aims to understand the parents' concerns and questions during their outpatient visit. Methods: Retrospective chart review was conducted to extract clinical data of children diagnosed with epilepsy (n: 158) for 176 outpatient visits. Intake form was filled by the parents/caregivers prior to the visit. Two sections were asked to be filled by parents/ care givers to express their concerns and questions for the epileptologist. These sections were: 1) Select the side effects of AEDs listed and write 3 concerns/questions to discuss during the visit, 2) A special questionnaire for screening various topics related to the epilepsy care and comorbidities. This questionnaire display questions in topics of medication treatment, sleep disturbance, academic or behavioral problems and the knowledge for SUDEP to be answered by checking "Yes" or "No". The clinical characteristics of each patient were recorded. Results: In this cohort (n:158), mean age was 11.7+/- 5.0 (age 1-23 years). Epilepsy diagnosis included; generalized (n:52, 29%), focal epilepsy (n:115, 56%), infantile spasm (n:2,1.1%), and childhood onset idiopathic epilepsy (n:9, 4.5%). Drug resistance epilepsy was reported in 112 (63%). The other neurological problems were: Autism in 29 (16.4%), attention deficit/ hyperactivity disorder in 25 (14%), learning disability in 112 (63%) of which special education placement was required in 44 (25%). All patients had healthcare coverage via private insurance (n: 119, 67%) or government sponsored medicaid plans (n: 58, 33%). The parents wrote a number of concerns/questions (mean: 1.1+/-0.9) to be discussed during the visit: parents Medication treatment and/or side effects (28%), test results (15%), seizures/events (17.5%) and alternative treatment options (2%). Other concerns were about behavioral (3.4%) or sleep problems (8%), learning disability (3.4%), and surgery treatment (2.3%). In 48 visits (27%), the parents did not write any comments/questions to be discussed during the visit. In the questionnaire section, the parents answered all questions whereas nearly half (n:20, 36%) did not write any comments for concerns/questions section and 12 wrote only one item for discussion. The parents answered "yes" more often if they want to discuss medication treatment (75%), side effects of medications (61%), sleep problems (42%), alternative treatment options (45%), epilepsy surgery (32%), behavioral problems (28%), and academic problems (36%). The parents listed more questions for medication treatment in the presence of refractory epilepsy or frequent seizures (p:0.02). The parents' education and type of insurance coverage did not affect the questions numbers or type of questions listed for discussion. Conclusions: Comprehensive epilepsy care should aim to improve the quality of life for children diagnosed with epilepsy. In order to accomplish this goal, the health care professionals should guide and educate the caregivers about the alternative treatment options and comorbidities reported with chronic epilepsy. However the results of the study suggest that parents either do not recognize comorbidities associated with chronic epilepsy or prefer discussion on the medication treatment only for better seizure control unless they are asked specific questions individually. This pilot study underlines the importance of screening tools to recognize and address the concerns for comprehensive epilepsy care. Funding: None of the authors received funding in support of this abstract.