Comprehensive Analysis of the Transition of Care Documentation Process in Pediatric Neurology Clinics for Patients with Epilepsy
Abstract number :
2.051
Submission category :
13. Health Services (Delivery of Care, Access to Care, Health Care Models)
Year :
2024
Submission ID :
63
Source :
www.aesnet.org
Presentation date :
12/8/2024 12:00:00 AM
Published date :
Authors :
Presenting Author: Olukemi Ogundiran, BA – University of Louisville School of Medicine/Norton Children's Hospital
Jaime Shoup, MD – University of Louisville School of Medicine/Norton Children's Hospital
Michael Sowell, MD – University of Louisville School of Medicine/Norton Children's Hospital
Cemal Karakas, MD – University of Louisville School of Medicine/Norton Children's Hospital
Rationale: Transition of care (TOC) is a critical process for adolescents with epilepsy as they move from pediatric to adult neurology services. Proper documentation and discussion of TOC are essential to ensure continuity and quality of care. This study aims to evaluate the extent of documentation and the nature of discussions regarding TOC in a pediatric neurology clinic.
Methods: Data were collected from the medical records of 50 patients aged 16-21 years who were seen in a pediatric neurology office visit in February or March 2024 at Norton Children’s Hospital. The analysis focused on demographic data, clinical characteristics, and specific parameters related to the documentation of TOC processes.
Results: Of all patients, 38% of patients were aged 16-17 years, 56% were 18-19 years, and 6% were 20-21 years; 48% male and 52% female. The racial/ethnic composition was 74% Caucasian, 12% African American, 8% Hispanic, 2% Asian/Pacific Islander, and 4% unknown. The average age of seizure onset was 11.0 years (SD = 2.8, median = 12). The median number of antiseizure medications that patients tried was 2. The average age when first seen by child neurology was 14.4 years (SD = 2.1, median = 14), and the average age when last seen was 17.8 years (SD = 1.1, median 18). In terms of TOC documentation/discussions, no patients had completed the transfer of care. Documentation of the TOC process was present for 11 patients, and only 2 patients had documentation of TOC appointment completion. The policy of transfer of care was shared with 5 patients. There was no documentation of barriers to TOC, and readiness for transition was not documented for any patients. Discussion of transition goals was documented for 5 patients. Documentation of advanced end-of-life care was found for 10 patients, while 42 patients had an emergency medical plan in their chart. Documentation of developing independence was noted for 6 patients, anticipated living situation for 6 patients, and social work involvement for 5 patients. There was only 1 referral order to an adult neurology provider documented. For female patients with epilepsy, the needs were discussed with 13 out of 26 (50%) patients, and among these, 4 out of 10 females with intellectual disability (ID) had their needs discussed. Patients with ID constituted 36% (18/50) of the cohort. Guardianship for patients with ID was discussed prior to 18 years of age for 3 patients, and developing independence was documented for 2 patients. There was no documentation of anticipated living situation, and social work involvement was documented for only 2 patients with ID.
Conclusions: The preliminary data indicate significant gaps in the documentation and discussion of the transition of care for adolescents with epilepsy. Despite the importance of TOC, many critical aspects, such as readiness for transition, barriers to TOC, and referral to adult neurology providers, are inadequately documented. This underscores the need for improved TOC practices to ensure a smooth and effective transition for these patients.
Funding: Child Neurology Foundation
Health Services (Delivery of Care, Access to Care, Health Care Models)