P2.049: Health Care Transition for Adult-Aged Patients with Medical Complexity: Caregiver Perspectives and Experiences in the Pediatric Emergency Department

Background: Less than 20% of children with medical complexities receive services to facilitate adult health care transition. Limited time, resources, and emergency planning are barriers to providing transition care within the pediatric emergency department (PED). Yet, adult-aged patients with medical complexity (PMC) frequently return to pediatric EDs for acute care, presenting case management challenges for patients, families, and medical providers. We sought to understand perspectives and barriers to transition of care in adult-aged PMC presenting to a PED.

Methods: English- and Spanish-speaking caregivers of PMC (18+ years) who presented to a single urban PED completed a survey examining their perspectives of seeking care in general (adult) compared to PEDs. Participants rated agreement with statements about the PED vs. a general ED (GED) using a 7-point Likert scale, with higher scores indicating greater agreement. They also indicated their experience, if any, with transition planning. Patient demographics, chief complaint, arrival method, emergency severity index (ESI), and ED disposition were extracted from the medical record.

Results: Sixty-six caregivers completed the survey from 10/08/24- 03/27/25. Table 1 describes demographic and visit characteristics for PMC. Half of participants reported they had never taken their child to a GED in the past; 54.5% of patients had an emergent (2) ESI score and 40.9% were admitted to the hospital. Table 2 presents the mean scores of participant responses to Likert-type questions. Participants rated “Trust in all staff members” as the highest endorsement for motivations to seek care at the PED vs. GED (M= 6.46 ±1.22). Cost or distance from home received neutral endorsement as reasons to present to the PED. Compared to a GED, participants rated the PED higher in cleanliness, nursing skill level, clinician knowledge and communication, diversity of staff members, clinician inclusion of caregiver in medical decisions, and treatment of the patient’s pain. Caregivers’ statements favoring a PED to a GED included: “[The patient] has been in wonderful hands [at the PED] and with all his complex medical history I felt he is in best hands here,” and “[the pediatric hospital] has been meeting my daughter's health care needs since she was an infant. All of her healthcare providers are affiliated with [the pediatric hospital] and all her previous records are here.” Most (57.6%) caregivers reported that medical providers had spoken with them about transition to adult care but had not initiated the transition.

Conclusion: Adult-aged PMCs in the PED tend to have high resource care requirements, yet many have not initiated transfer to adult care. Caregivers reported greater levels of trust in the pediatric care team, which may underlie hesitancy to transition. These findings may help optimize transition of care programs in pediatric settings.