Abstract Rationale Children with pulmonary hypertension (PH) who survive into adulthood face the complex process of transitioning from pediatric to adult care, which can present several unique challenges. Among young adults with chronic medical conditions, the time of transition between pediatric and adult centers is further complicated by changes in insurance coverage, living situations and other psychosocial stressors of adolescence. Such lapses are linked to increased health care utilization, medication discontinuity, and even mortality. While these observations are best reported in other diseases such as sickle cell disease, cystic fibrosis and congenital heart disease, little is known about the specific challenges and best practices surrounding transitions of care in PH. To better understand common practices in the transition of care for young persons with PH, we surveyed expert pediatric and adult PH centers. Methods We conducted a semi-quantitative survey of pediatric and adult PH centers to assess current practices and challenges in transitioning care. Surveys were distributed via email to Pediatric Pulmonary Hypertension Network (PPHNet) centers and the adult academic center(s) nearest to each PPHNet center. The survey was deemed IRB-exempt and was administered using REDCap. Results Twenty of 45 centers (44%) completed the survey: 9 adult centers, 10 pediatric centers, and 1 combined program serving patients across the lifespan. All centers estimated transitioning fewer than 10 patients per year, typically between ages 18 and 23. Most pediatric centers (80%) reported that over half of their patients relied on Medicaid. Sixty percent used a standardized checklist to guide the transition process. Eighty percent provided direct handoff communication, either by phone or in person, and half arranged for a member of the adult care team to meet the patient before formal transfer of care. Among adult centers, 8 of 9 reported scheduling patients within three months of their final pediatric visit, regardless of clinical stability, and two-thirds indicated they had a standardized approach to receiving and scheduling the first visit for patients transitioning from pediatric programs. Free-text responses highlighted fewer available support services and an increased emphasis on patient autonomy and responsibility in typical adult healthcare systems as key challenges during transition. Conclusions Practices surrounding the transition of PH patients from pediatric to adult care vary widely, though most pediatric centers report deliberate efforts to ensure safe and effective transfer. Further work is needed to evaluate patient outcomes during this vulnerable period and to develop evidence-based best practices for transitioning PH care. This abstract is funded by: T32 HS029585
Verma et al. (Fri,) studied this question.