Abstracts

Rationale: Electronic surveys are given to caregivers following a first visit to the Comprehensive Epilepsy Center at Children s Medical Center Dallas. These surveys assess caregivers understanding of the diagnosis, impression of quality of care and recollection of specific education provided. Surveys were reviewed to determine if responses differed due to timing of survey and primary caregiver language.Methods: From 2011 to 2013, 671 electronic surveys (Long Range Systems) were given to English and Spanish speaking caregivers of children seen at UT Southwestern Medical Center/Children s Medical Center, Dallas for evaluation of a first seizure or epilepsy. Caregivers were asked to choose preferred language; 118 Spanish and 553 English surveys were completed. 453 surveys were given at the end of the first visit, 218 surveys were given at the beginning of the second visit. 14 questions asked caregivers to rate care provided, explanation of diagnosis, medications prescribed, and seizure safety precautions. Information from both data sets were compared. A 4-point Likert Scale was used.Results: 78% of caregivers in the first visit vs. 46% in the second visit thought the diagnosis was explained very well (p 0.01). 80% in the first visit vs. 48% in the second visit gave a most favorable rating for involvement in decision making for their child s care (p 0.01). Overall care was given a more favorable rating at the first visit vs. the second visit (78% vs. 55%, p 0.01). However, favorable ratings were similar between the two visits when the good and very good ratings were combined. Patient recollection of specific counseling measures was higher in the first visit, including information about water safety (p 0.01) and medication instructions (p 0.01). Language affected favorable ratings. Although Spanish interpreters were available, only 79% of Spanish speakers vs. 89% of English speakers stated the diagnosis was explained very well (p 0.01). Spanish speakers felt less involved in decision making for their child s care (45% vs. 75%). However, there was no significant difference in ratings on how well medication instructions were given. Language related differences were less evident when asking about specific education provided. For example, there was no significant difference in rating of how well medication instructions were given.Conclusions: For both general (e.g. how well diagnosis explained) and specific (e.g. discussion of first aid) survey questions, caregivers had more favorable impressions when asked at the first clinic visit than the second. Spanish speakers were less likely than English speakers to give the most favorable rating for general questions, or involvement in decisions, but both rated specific information equally. Our findings suggest specific counseling about medications and safety should be reviewed at the second visit because family members may not adequately recall previous information. Spanish speaking families might become better engaged in patient care if alternate opportunities for seizure education in Spanish were offered (information classes or follow up phone calls).