Academic and Research Skills
Career Development
Children with Chronic Conditions
General Pediatrics
Quality Improvement/Patient Safety
Trainee Track
Matt Demczko, MD (he/him/his)
Assistant Professor of Clinical Pediatrics
Childrens Hospital of Philadelphia
Philadelphia, Pennsylvania, United States
Michael Fox, MD, MEd (he/him/his)
Associate Professor of Clinical Pediatrics
Childrens Hospital of Philadelphia
Philadelphia, Pennsylvania, United States
Nicole Jaffe, Md (she/her/hers)
Attending Physician
Children’s hospital of Philadelphia
Wynnewood, Pennsylvania, United States
Workshop
Description: Recent advances in precision medicine have led to the formation of disease-specific, multi-disciplinary clinics that aim to provide expert care for rare disorders. Often intended to function as a patient-centered medical home, these specialty clinics have traditionally included numerous subspecialists, but often fail to include pediatricians, let alone complex care specialists. As this specialized care often involves an understanding of medical technology and complex symptom management, the need for pediatricians comfortable treating children with medical complexity (CMC) is great.
In this workshop we will interactively guide participants through the process of building complex care pediatricians into the subspecialty clinic. The presenters offer perspective from three unique programs - a well-established leukodystrophy clinic, a growing mitochondrial disease clinic, and a newly formed vascular anomalies clinic - to assist participants wherever they might be along their journey. A short introductory didactic will introduce each program and general infrastructure. Breakout groups will then have an opportunity to "build" a disease-specific program from the ground up with focus on the role of the pediatrician. Topics to be discussed include appropriate support staff, breadth of symptom management, care management integration, and building key partnerships. Regrouping as a large group to present each team's ideas, participants will then break into pairs to play the role of caregiver, presenting the clinician with certain scenarios that might be handled in their clinic. The session will end with a panel discussion where participants can ask additional questions and trainees can learn more about this possible career path.