A Pediatric Perspective on Improving Health Outcomes for People with Disabilities of All Ages Dean Karavite, MSI Department of Biomedical and Health Informatics The Children’s Hospital of Philadelphia (CHOP)

Children with Disabilities in the US  5.2 million (8.4% of all children) have some type of disability - half have a severe disability  Some interact with the healthcare system their entire life and provide a unique perspective on how we deliver care to people with disabilities

Pediatric Medicine and Disabilities  Treatment and management  Also prevention and even work toward eliminating some disabilities  CHOP examples: Retinopathy of Prematurity (ROP), hearing loss, Spina Bifida, and first ever child hand transplant

Family Centered Care  Pediatrics is, by default, family centered  Parent as caregiver/decision maker  For aging adults, the roles are reversed  Are there differences?  Example: What is reimbursed for patient- family education in pediatrics

Unpaid / Family Caregivers  35 million in the US and growing  Average is a woman in her 40s taking care of one or more parents  40% of long term care “for free”  Negative impact on stress, work/income, their own healthcare and health

Patient Centered Care  Is there a difference between pediatrics and adult medicine?  For older adults many forms of illness and/or disabilities are expected or might be considered normal  Perceptions of pediatric care

Transition to Adulthood  Specialists work with kids with disabilities to manage the transition to adulthood  Education, employment, independence, socializing... and adult medicine  Why is the transition to adult medicine difficult?  Is there a similar transition to senior adulthood?

Bright Futures for Aging Adults?

Research and Quality in Pediatrics  Learning health system  Primary care research consortium  Wellness registries  PedsNet, disease-specific network (4.1 million patients)

Thank you!  Contact    dbhi.chop.edu