Pediatric and adult epileptologist perspectives and experiences of pediatric to adult epilepsy care transition: "Saying goodbye and opening a door."

We aimed to describe perspectives of transition and transfer of adolescents and young adults with childhood-onset epilepsy from pediatric to adult care from the viewpoints of both pediatric and adult epileptologists. Telephone semi-structured interviews with pediatric (n = 15) and adult (n = 11) epileptologists at leading U.S. epilepsy centers were used to collect data about the transition process. Interviews were audio-recorded, transcribed, systematically coded using thematic analysis by two independent researchers, and subsequently checked for agreement during regular meetings. Participants were on average 46 years old (SD = 7.4), 50% male, 91% Non-Hispanic and 85% Caucasian; all had completed a formal epilepsy or clinical neurophysiology fellowship (mean = 11 years since terminal training) and were employed at a comprehensive epilepsy center. Three interrelated themes regarding epileptologists' perspectives of epilepsy transition and transfer of care were evident: (1) the process is unnatural and disruptive, (2) clinicians make the best of challenges, and (3) the epilepsy transition process includes a spectrum of broad needs some of which are unique to epilepsy care while others are common to other chronic diseases. Despite challenges, epilepsy clinicians spontaneously expressed stress, empathy, and commitment to providing the best possible care.

Axon Registry® data validation: Accuracy assessment of data extraction and measure specification.

OBJECTIVE: To conduct a data validation study encompassing an accuracy assessment of the data extraction process for the Axon Registry®. METHODS: Data elements were abstracted from electronic health records (EHRs) by an external auditor (IQVIA) using virtual site visits at participating sites. IQVIA independently calculated Axon Registry quality measure performance rates based on American Academy of Neurology measure specifications and logic using Axon Registry data. Agreement between Axon Registry and IQVIA data elements and measure performance rates was calculated. Discordance was investigated to elucidate underlying systemic or idiosyncratic reasons for disagreement. RESULTS: Nine sites (n = 720 patients; n = 80 patients per site) with diversity among EHR vendor, practice settings, size, locations, and data transfer method were included. There was variable concordance between the data elements in the Axon Registry and those abstracted independently by IQVIA; high match rates (≥92%) were observed for discrete elements (e.g., demographics); lower match rates (<44%) were observed for elements with free text (e.g., plan of care). Across all measures, there was a 76% patient-level measure performance agreement between Axon Registry and IQVIA (κ = 0.53, p < 0.001). CONCLUSION: There was a range of concordance between data elements and quality measures in the Axon Registry and those independently abstracted and calculated by an independent vendor. Validation of data and processes is important for the Axon Registry as a clinical quality data registry that utilizes automated data extraction methods from the EHR. Implementation of remediation strategies to improve data accuracy will support the ability of the Axon Registry to perform accurate quality reporting.

The epilepsy transition care gap in young adults with childhood-onset epilepsy.

INTRODUCTION: A substantial proportion of young adults with childhood-onset epilepsy may require ongoing long-term epilepsy care as adults. OBJECTIVE: The objective of the study was to assess the extent to which epilepsy transition discussions occurred in adolescents with childhood-onset epilepsy prior to the age of attaining majority (prior to their 18th birthday) in a community-based cohort of individuals with childhood-onset epilepsy followed longitudinally. METHODS: The Connecticut Study of Epilepsy is a prospective, community-based study of newly diagnosed childhood-onset epilepsy with 613 children (onset < 16 years old; year recruited: 1993-97). During the final exit interview, 308 young adults ≥18 years old (or parent-proxies) were asked, "Before you turned 18 years old, did your doctors or other epilepsy care providers talk with you about how your epilepsy care needs might change as you get older?" ('transition discussion'). We examined whether or not sociodemographic and clinical characteristics were associated with epilepsy transition discussions. RESULTS: For young adults with childhood-onset epilepsy (N = 308; mean age: 24 years, SD = 4.0; mean age of epilepsy onset: 5.4 years, SD = 3.7), only 15% responded "Yes" to having had a "transition discussion". Of those with "active epilepsy" (N = 130; seizure-free < 5 years or on an antiseizure medication within 2 years of their 18th birthday) upon attaining the age of majority (18 years), 40/130 (~31%) young adults had "transition" discussions, compared with 7/178 (4%) of those with "inactive epilepsy" (p < 0.0001). Self- (N = 95 active epilepsy) and proxy-reports (N = 35 active epilepsy) of "transition" discussions were comparable (31%). Having a transition discussion was associated with neurodevelopmental comorbidity and type of epilepsy care provider at time of last contact (p < 0.05). Having a "transition" discussion was not associated with gender, race/ethnicity, high school graduation, parent insurance, epilepsy syndrome, psychiatric disorder, or intellectual disability (intelligence quotient [IQ] < 70) for those with "active epilepsy". In assessing transfer of care, we found that only 50% of cases (who had active epilepsy at transition) were being seen by an adult or general neurologist at the time of the exit interview. CONCLUSIONS: Only one-third of young adults with active epilepsy at transition in this community-based study reported having epilepsy care transition discussions with healthcare providers before the age of 18 years. Identifying barriers to successful delivery of effective epilepsy transition care is critical to remediating treatment care gaps and building effective future care models.