Abstracts

Rationale: Healthcare transition (move from pediatric to adult healthcare) requires adolescents and young adults (AYA) to acquire self-management skills for a successful transition (Betz et al., 2023). Transition readiness (TR) describes a level of preparation for transfer to adult care, and includes factors such as understanding their medical condition, knowing how to navigate the healthcare system, the ability to advocate for healthcare needs, and adhering to treatment plans effectively (Straus, 2019). Health-related quality of life (HRQOL) describes an individual’s overall wellbeing concerning their health status and includes physical, psychological, social, and emotional well-being. In a study of TR and HRQOL in AYA with chronic medical conditions (Traino et al., 2021), individuals who were less engaged in routine healthcare utilization reported the poorest TR but had higher HRQOL, suggesting potentially complex relationship between TR and HRQOL. The purpose of the current study is to examine the relationship between transition readiness and epilepsy-specific HRQOL in AYA with epilepsy and their caregivers.


Methods: AYA with epilepsy (N=161, Mage=18.51, 71.4% White Non-Hispanic, 54.7% female) and their caregivers (N=96) were recruited in routine outpatient neurology appointments. Questionnaires included demographics (including self-reported mental health diagnosis), a measure of transition readiness (TRAQ or ETRQ) and the PedsQL Epilepsy Module. The TRAQ is a 20-item measure assessing TR in AYA (Sawicki et al., 2011). The ETRC is a 23- (AYA) or 25- (caregiver version) item measure assessing TR in epilepsy (Andrade et al., 2017). The PedsQL Epilepsy Module is a 29-item measure assessing epilepsy-specific HRQOL. Subscales include impact, cognition, sleep, mood, and executive functioning (Modi et al., 2017). Linear regression models examined the relationship between youth-reported TR and caregiver and youth-reported HRQOL, controlling for age and self-reported mental health diagnosis.


Results: TR was not associated with any subscale of the caregiver-reported PedsQL Epilepsy Module. AYA with higher TR had significantly lower self-reported HRQOL in the impact domain compared to those with lower TR, p = .025. History of mental health diagnosis was significantly negatively associated with all caregiver- and youth-reported subscales of HRQOL, ps < .05.


Conclusions: Our study found TR was not positively associated with HRQOL, and a history of mental health diagnoses was associated with all domains of HRQOL.The impact of mental health diagnoses may be more significant than measures of transition readiness in examining HRQOL in AYA with epilepsy, aligning with previous research in pediatric epilepsy (Brothers et al 2023). Future research should examine long term outcomes to assess if transition readiness or mental health outcomes better predict post-transfer clinical outcomes, including HRQOL.


Funding: This work was supported by East Carolina University through an award granted to Aimee W. Smith and Cincinnati Children’s Hospital Medical Center through the Endowed Scholars Award to Avani C. Modi.