Authors :
Kellie Kruger, MD – Mayo Clinic Arizona
Presenting Author: Hanna Schaeffeler, BS – Mayo Clinic Arizona
Nicole Schuren, MSW, LMSW – Mayo Clinic Arizona
Hoerth Matthew, MD – Mayo Clinic
Cornelia Drees, MD – Mayo Clinic
Rationale:
Healthcare transition (HCT) is the process of moving from a child/family-centered model to an adult/patient-centered model of care. Parents often report feeling unsure and overwhelmed when leaving pediatric subspecialty care. Multidisciplinary transition clinics have been proposed to mitigate these stressors. The goal of the study is to identify the concerns of parents/caregivers (PCs) during the HCT process.
Methods:
Included were patients with epilepsy seen between 1/20/2021 and 9/18/2024 in the multidisciplinary Mayo Clinic Arizona Pediatric to Adult Transitions in Healthcare (PATH) clinic by clinicians, social workers, and child-life specialists to provide medical and psychosocial assessments and resources. Demographic information, epilepsy and psychosocial history, and documented concerns were extracted from the electronic medical record and analyzed via descriptive statistics. PCs completed a questionnaire pre and post visit to evaluate concerns regarding healthcare literacy. The survey assessed how the patient’s chronic health conditions impacted their parents’ social and emotional wellbeing, as well as personal and professional goals. Excluded were patients for whom data was incomplete. The Wilcoxon Signed Rank Test was used to compare Likert scale responses between the pre and post survey results.
Results:
A total of 46 patient PCs were included. Table 1 shows patient demographics. Survey responses are displayed in Table 2. Comparing pre- and post-visit answers, PCs were significantly more likely to report: 1) increased confidence in patients’ ability to manage their epilepsy and other medical conditions independently in adulthood (p=< 0.001), 2) increased understanding of community and financial resources to help patients manage chronic illness (p=< 0.001), 3) more confidence that patients’ medical conditions would not always have a significant impact on their own lives and daily routines (p=< 0.001), 4) more confidence in their own ability to become more socially independent and pursue their own career goals (p=0.013). Unsurprisingly, PCs did not report that patients had a better understanding of the their medical condition after the clinic visit, as epilepsy education was not a primary objective of this visit.