Abstract

Transition from pediatric to adult care is important for patients with special health care needs, who overall have greater mental health needs. This study explores transition perceptions among parents of children and youths with epilepsy (CYEs). We examined correlations between parental responses on the Transition Readiness Assessment Questionnaire (TRAQ) and chart data. The main hypothesis is that mental illness comorbidities relate to less confidence in preparing for transition. The secondary hypothesis is that other comorbidities and care utilization also relate to perceived difficulty with transition. Thirty-five parents of CYEs aged 12 to 22 years in the Cleveland Clinic system completed TRAQ in 2020 and 2021. TRAQ items assess the importance of and confidence about transition. Demographic information (age, gender, race, insurance), number of emergency department (ED) visits and inpatient stays within 1 year of completing the survey, number of medical, mental illness, and neurological comorbidities, and number of antiepileptic drugs (AEDs) prescribed were extracted from electronic medical records. Spearman’s Rho test was performed between these variables and ratings on transition items using SAS 9.4. The average age of CYEs was 16.89 years, 45.7% were female, 74.3% were White, 17.1% were Black or multiracial, 65.8% held private insurance, and 34.3% were publicly insured. CYEs had an average of 1.63 mental illness, 1.89 medical, and 1.26 neurological comorbidities. On the TRAQ survey confidence item, the average rating was 4.57 out of 10. There was a significant moderate negative association between transition confidence and the number of mental illness comorbidities (rs[33] = –0.37; p < 0.03). No statistically significant correlation was found between transition confidence and number of medical or neurological comorbidities, ED visits, inpatient stays, or AEDs. Our main hypothesis was supported: mental illness comorbidities were significantly associated with less confidence in transition ability. The findings highlight the importance of identifying and managing mental illness comorbidities in CYEs. The limitations of the study include the small sample size and the lack of a standardized and normalized transition scale. Further work is needed to assess the transition perceptions of CYEs themselves.

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