Abstracts

Rationale: Background: Most published pediatric self-management programs narrowly focus on medication adherence or behavioral risk reduction; there are no Level I or II studies of pediatric psychosocial interventions; none are known to directly query patients (Wagner et al., 2017). The Program for Active Consumer Engagement in Self-management (PACES) in Epilepsy, an 8-session group program, was created and validated with adult patients based on multiple surveys, focus groups, and RCT. Content focuses on medical, mood, and diverse psychosocial adaptation strategies. A goal setting component in each session abets behavior change. RCT data showed immediate and long-term effects on mood, epilepsy self-management and self-efficacy, and QoL. Purpose: Conduct focus group research with (a) teens with epilepsy and (b) their parents/caregivers to identify life problems of adolescents living with epilepsy, and their intervention preferences.

Objective: Creation of a developmentally appropriate intervention program and associated materials to be used in future, planned studies to evaluate program efficiency of “Teen PACES.”

Methods: Prospective focus group research with (a) adolescents with epilepsy aged 14-15; (b) adolescents with epilepsy aged 16-17; and (c) parents of adolescents aged 14-17 with epilepsy). Focus group participants were asked between 7 and 11 open-ended questions to solicit qualitative data as to life problems related to epilepsy; epilepsy learning needs; and self-management program structure and design preferences. Groups conducted consecutively until content saturation reached.

Results: Adolescents aged 14-15 indicate problems with seizure management and medication side effects; epilepsy disclosure; changes in activities and participation; bullying; psychosocial resources; and parental restrictions/hypervigilance. They desire a peer-based group lead by a young adult epilepsy professional and trained peer which meets on multiple occasions through a medical establishment. Adolescents aged 16-17 indicate problems with seizure management and medication side effects; driving and independence; the future (school, work, and relationships); epilepsy disclosure; changes in activities and participation; and parental restrictions/hypervigilance. They desire 1:1 self-management intervention with their doctor and brief web-based or other on-demand resources. Independence was more of a theme here. Parents report problems with vigilance, medication concerns, worry, restricting activities for safety, resources/isolation, and managing conflict with teens desiring independence. They desire a support group emphasizing shared parenting experiences, advocacy, and problem-solving.

Conclusions: This unique study is a first attempt to understand the self-management needs of teens with epilepsy from the perspective and patients and their parents. The qualitative data will be utilized to develop a psychosocially-oriented intervention to be tested by randomized controlled trial, the details of which are pending data saturation.

Funding: Health Promotion and Disease Prevention Research Center cooperative agreement from CDC, U.S. Department of HHS