PC2009: Mind the Gap: Transitioning from Pediatric to Adult Care for Underserved Adolescent Patients

Background: Based on the National Survey of Children’s Health in 2016, 13.6 million children under 18 years old (18.5%) have special health care needs. Many of these children belong to minority ethnic groups or are underprivileged and face challenges in transition from pediatric to adult healthcare. These transitions are difficult and can lead to gaps in care. Data on the knowledge and attitudes of parents of adolescents regarding the transition of care is scant. The aim of this study was to present the philosophy of transition of care to the parents of adolescent patients and ascertain their knowledge and concerns about transitional care.

Methods: We distributed a survey via REDCap to the parents of patients aged 15-18 years of age who were seen in our adolescent clinic or inpatient units in a large children’s hospital. The anonymous survey included questions about demographics and parents’ knowledge and preparation for their child’s transition of care from pediatrics to adult healthcare. Descriptive analysis was used to summarize the data.

Results: Out of a total of 38 parent respondents with an adolescent child, 81.6% were Hispanic, 10.5% white and 7.9% Asian. The majority of the participants (55.3%) had a household income of <$50K, 86.9% did not have a college degree, and 13 (34.2%) reported that their child had a chronic illness. 73.7% of parents reported that their child plans to attend college and 64.9% reported that the child plans to stay home after becoming 18 years old. 56.8% of the respondents reported that they have a primary care physician (PCP) in mind when their child turns 18 years old but about half reported that they do not have plans to address insurance needs. Families with higher income were more likely to have plans for insurance (See Figure). When asked if a one-page document that summarizes their child’s medical condition would be beneficial, the vast majority (92.1%) of the respondents reported that such a document would be very helpful. The majority of those who left a comment to the question “How we can help you with the transition of healthcare of your child when they become 18 years old” responded that they need help finding doctors or specialists.

Conclusion: Our study shows the majority of parents who come from underserved backgrounds do not have plans for transition of care for their adolescent when they turn 18 years old. Implementing a policy of routine counseling regarding transition of care planning with adolescents and their parents will support a smooth transition to adult healthcare. We are in the process of developing a one-page summary for our adolescent patients and parents to summarize their important health care needs and steps for transition of care.