Abstracts

Rationale: Caregiving for children with epileptic encephalopathies (EE) affects caregivers' lives in multiple ways. To better understand this impact we need psychometrically sound measures that ask about life domains most important to caregivers. The purpose of this study was to obtain information from caregivers of children with EE about both positive and negative impacts of caregiving, and to compare it to information obtained from an expert panel of clinicians. The results will be used to develop items for standardized scales for measuring the caregiving impact. Methods: Parents of children (age < 18) with EE participated in small group discussions or in one-on-one interviews. To be eligible caregivers were required to be over 18, speak English, and care for a child with Dravet Syndrome or other EE. Results: A total of 19 parents participated, 12 in small groups and 7 in interviews. Average age of the caregivers was 42 years, 88% were female, 85% were white, 79% were married, and almost one-third live outside of the US. The mean age of the child with EE was 8 (range: 2-18 years). Almost two thirds (n=12; 67%) reported that they had quit a job, decreased hours, and/or taken a leave of absence. About 70% reported inability to 'switch off' to their child's condition, worrying about the future, worrying about their child's growth and development, and feeling sadness about the things their child misses out on. As a group, parents reported worse psychological and physical health than the US general population, especially worse fatigue, anxiety, stress, sleep, and depression. The discussions about benefits and challenges of caring for a child with a severe seizure disorder were informative and often emotional. Caregivers talked about impact in terms of four overarching areas: physical, mental, social and financial. Many caregivers reported being physically exhausted and sleep deprived. Demands of 24/7 care made social life, employment, and taking care of one's health difficult. Worries about the child's health and future, and the demands of caregiving often contributed to psychological distress. Many caregivers, especially those living in the US, reported financial difficulties and inability to access respite care. On the other hand, many of the caregivers also reported that caring for a child with EE was rewarding in some ways. They learned to better understand and appreciate what is important in life. Most felt that the experience of caring for a child with EE helped them to be more compassionate and to become better advocates. Conclusions: Caregivers of children with EE reported considerable caregiving burden, especially those living in the US, a finding that suggests the need for more support for caregivers (both financial and in terms of respite care or household help). Parents confirmed most of the domains of impact identified by the experts. This study will inform the development of a new psychometrically sound measure of the impact of caregiving for children with EE. Better information about impact of caregiving can then be used to identify treatments and supports that would be most beneficial for caregivers and their families. Funding: Research reported in this abstract was supported by Zogenix, Inc. under contract #ZXIIS2015-005.