Abstracts

Rationale: Early Life Epilepsies (ELE) are associated with a wide range of severe impairments and disabilities in multiple domains. Most studies on the quality of life for families living with ELE highlight the difficulties and challenges, which are considerable. Little emphasis has been placed in the strengths of children with ELE and what they enjoy doing. As part of a larger study on the natural history of ELEs, we gathered information from parents about what their children enjoyed doing and the positive characteristics in their children. Methods: In partnership with parents, structured surveys were developed to reflect parental concerns about and experiences with their children’s abilities and impairments. The study was implemented in a web-based platform (CLIRINX©). Specific questions were “What kinds of activities does your child enjoy?” which was followed by a series of activities and further structured and open-ended questions for each one endorsed. Parents were also asked an open-ended questions, “What do you see as a particular strength(s) of your child? What makes you most proud? What makes your child most proud about him or herself?” Parents were invited to partake in the study and complete a web-based consent process and informed consent form. Responses were analyzed with SAS©. Results: 193 parents completed the questionnaires for their participant-children and represented groups for Dravet Syndrome, ESES/CSWS/LKS, KCNB1, KCNQ2, Lennox Gastaut, and Other groups. There were 104 (54%) females, and the median age was 7 years (interquartile range of 4-12, maximum age,37y). Responses were grouped separately by epilepsy type and age. The most commonly endorsed activities (Figure 1) tended to be passive activities such as listening to music (76%), being read to (64%), and being sung to (56%). Activities that required good hand function were endorsed by smaller but still substantial proportions. These included playing with puzzles (33%), playing with blocks (26%), coloring (37%), and playing instruments (37%). Playing with water was favored by 73%. Some differences across epilepsy groups were seen for a few activities but may reflect differences in overall levels of function and hand use. Parents described their children as loving, affectionate, and sweet. Many of their comments emphasized their children’s determination and efforts (Figure 2) Conclusions: In studies of ELE and its effects on quality of life, there is often a focus on the challenging aspects of living with ELE. However, our parent-reported measures revealed that there are several activities these young people enjoy or excel at. Further research into understanding these strengths may prove advantageous in improving quality of life and could provide insights into strengths that could be used in therapies. Funding: Supported by the Stanley Manne Children’s Research Institute and Ann & Robert H. Lurie Children’s Hospital of Chicago under the Precision Medicine Strategic Research Initiative and the Pediatric Epilepsy Research Foundation (PERF).