Patient, Caregiver, and Provider Perceptions of Transition Readiness and Therapeutic Alliance during Transition from Pediatric to Adult Care in Epilepsy

Abstract

Transition from pediatric to adult health care is a time of high risk for adolescents and young adults (AYAs) with epilepsy. Our aims are to examine patient, caregiver, and provider perceptions of transition readiness and the influence of patient-provider alliance in the context of transition readiness. Our cross-sectional study included 82 AYAs with epilepsy prior to transition. Patients, caregivers, and providers completed questionnaires (e.g., transition readiness and working alliance). Statistical analyses included independent samples and paired t-tests. Participants were 17.3 ± 2.8 years on average, 54% were females, 84% were White (non-Hispanic), and 38% had generalized epilepsy. Caregivers reported significantly higher transition readiness than their AYAs (t (72) = −10.6, p < 0.001). AYAs and providers reported similar alliance scores. Providers who felt patients were ready to transition had higher patient-reported transition readiness and provider-reported alliance scores. These data suggest that patients and providers are well aligned in the transition process, and providers appropriately perceive key areas necessary for transition. Caregivers and patients had discrepant perceptions of transition readiness, highlighting the importance of assessing both unique transition perspectives. Dedicated transition programs are likely to be beneficial in improving transition readiness and increase alignment across patients, caregivers, and providers.

Clinical, Sociodemographic, and Psychological Factors Associated with Transition Readiness in Patients with Epilepsy

“…Since parents are the principal healthcare agents for their sons affected by epilepsy, the examination of their perceptions of the transition from pediatric to adult healthcare is needed to develop effective and orchestrated plans for healthcare management [31]. A previous study showed that caregivers and patients differently perceive transition readiness, suggesting the importance of evaluating both transition experiences [32]. Some authors suggested that families of children with epilepsy experience high levels of stress during the parental role transition [33].…”