509 - Charting the Waters of Pediatric Complex Care Programs: Health Services, Referral Sources, and Patient Eligibility

Publication Number: 509.4425

Lisa C. Letzkus, UVA School of Medicine, Charlottesville, VA, United States; Laurie Glader, Nationwide Children's Hospital, No concerns, OH, United States; Maria Osipovich, Boston Children's Hospital, Boston, MA, United States; Annique K. Hogan, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, United States; Heather C. Moore, Baylor College of Medicine, The Woodlands, TX, United States; Kristi Williams, Children's Mercy Hospitals and Clinics, Kansas City, MO, United States; Scott R.. Callahan, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States; Nicholas A. Holekamp, Ranken Jordan Pediatric Bridge Hospital, St. Louis, MO, United States; Arda Hotz, Boston Children's Hospital, Boston, MA, United States; Ricki Goldstein, University of Kentucky College of Medicine, Lexington, KY, United States; Katharine A. Kevill, NYU Langone Health, NY, NY, United States; Kirin Suri, Joseph M. Sanzari Children's Hospital Hackensack University Medical Center, Hackensack NJ, NJ, United States; Julia Orkin, The Hospital for Sick Children, Toronto, ON, Canada; Ricardo A.. Mosquera, McGovern Medical School at the University of Texas Health Science Center at Houston, Houston, TX, United States; Amanda Porro, Joe DiMaggio Children's Hospital, Hollywood, FL, United States; Karen C. Willis, Akron Children's Hospital, Akron, OH, United States; Jay Berry, Complex Care, Boston Children's Hospital, Boston, MA, United States

Background: Children with medical complexity (CMC) – a population with complex health conditions and functional limitations - have a small prevalence but large health system impact. CMC face challenges accessing comprehensive and coordinated care. Many experience fragmented care, unmet healthcare needs, and suboptimal outcomes. In response, structured clinical programs have emerged ad hoc yet pragmatically in their local areas to help CMC.

Objective: This study assessed the health services offered, referral sources, and patient eligibility of structured clinical programs for CMC.

Design/Methods: Preliminary analysis of an electronic survey deployed 5/1/24 and currently open. A multisite team of complex care program leaders developed the survey using iterative design and cognitive testing to solicit fundamental information on program characteristics. The survey targeted clinical and administrative leaders (e.g., directors, section heads) of structured clinical programs for CMC. Absent a validated program list, key informants from organizations such as the Children’s Hospital Association and Pediatric Complex Care Association identified and compiled programs and their leaders with snowball sampling.

Results: Forty-seven clinical programs dedicated to CMC from 25 U.S. states (of all geographic regions) and Canadian provinces completed the survey to date. The most common duration of programs’ existence was 11-to-20 years (36% of programs). Regarding health services, 51% of programs provided outpatient care only, 40% both outpatient and inpatient care, and 9% inpatient care exclusively. Among the programs providing outpatient services, 49% provided consultative care only, 28% both consultative and primary care, and 23% primary care only. Inpatient providers were the most commonly reported referral source across programs (94%). The most common range of total unique patients served annually by the programs was 251 to 500 (28% of programs). Eligibility criteria frequently included the use of medical equipment and technology (80% of programs); only five programs (10%) included primary behavioral complexity.

Conclusion(s): Although diverse, many pediatric complex care programs share common health services, referral sources, and patient eligibility. Clustering programs with the most similar attributes may help establish peer groups to share programmatic ideas (e.g., personnel and financing), distinguish ideal structures and care processes, and optimize program viability and effectiveness.