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

Emily R. Nurre; Aimee W. Smith; Marie G. Rodriguez; Avani C. Modi

doi:10.1055/s-0040-1716914

Journal of Pediatric Epilepsy, Table of Contents

Journal of Pediatric Epilepsy 2020; 09(04): 156-163
DOI: 10.1055/s-0040-1716914

Review Article

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

Emily R. Nurre

¹Department of Neurology and Rehabilitation Medicine, University of Cincinnati College of Medicine, Cincinnati, Ohio, United States

,

Aimee W. Smith

²Department of Psychology, East Carolina University, Greenville, North Carolina, United States

,

Marie G. Rodriguez

²Department of Psychology, East Carolina University, Greenville, North Carolina, United States

,

Avani C. Modi

³Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States

⁴Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio, United States

› Author Affiliations

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.

Keywords

epilepsy - transition - therapeutic alliance

Full Text

References

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