Modifiable factors related to transition readiness in adolescents and young adults with epilepsy

Abstract

Objective: To characterize transition readiness in adolescents and young adults (AYAs) with epilepsy and validate the social-ecological model of AYA readiness to transition (SMART) in a sample of AYAs with epilepsy.

Methods: This cross-sectional study included typically developing youth with epilepsy 13-25 years old seen in a comprehensive epilepsy center. Adolescents and young adults completed measures of transition readiness (Transition Readiness Assessment Questionnaire; TRAQ), epilepsy knowledge, epilepsy self-management, developmental factors, and emotional and behavioral functioning. Adolescents and young adults also completed a measure of their relationship quality with healthcare providers. Caregiver report was included when available.

Results: Participants included 82 AYAs (M_age = 17.3 ± 2.8; 86.6% White Non-Hispanic, 53.7% females) with epilepsy. Transition Readiness Assessment Questionnaire scores (M = 3.33, SD = 0.86) were correlated with modifiable and non-modifiable factors: age (r = 0.66, p < 0.001), income (r = -0.23, p = 0.04), AYA cognitive problems (r = 0.24, p = 0.03), AYA knowledge (r = 0.31, p = 0.005), AYA expectations (r = 0.26, p ≤ 02), AYA inattention (r = -0.24, p = 0.03), AYA executive dysfunction (r = 0.25, p = 0.02), caregiver-reported AYA odd behaviors (r = -0.25, p = 0.036), and caregiver-reported AYA communication problems (r = 0.25, p = 0.04). Transition Readiness Assessment Questionnaire scores were higher in AYAs who had seen adult providers for general healthcare issues (e.g., primary care), but were not related to other demographic (e.g., minority status, insurance), medical (years since diagnosis, type of epilepsy, polytherapy, seizure frequency), developmental (e.g., adaptive skills, cognitive functioning) or emotional/behavioral factors (e.g., skills, relationship with the provider, psychosocial functioning). Linear regression including variables significantly correlated with the outcome of transition readiness (F (7, 59) = 9.70, p < 0.001) explained 54% of the variance. Specifically, age was the only significant model predictor.

Significance: Transition readiness in AYAs with epilepsy was predicted by non-modifiable (e.g., age) and correlated with modifiable factors (e.g., knowledge, psychosocial/cognitive functioning). Providers must better prepare patients prior to transfer, and future research should use an epilepsy-specific measure of transition readiness to identify targets for intervention.

Keywords: AYA; Chronic illness; Disease knowledge; Neurological disorders; Transfer.