A Pediatric Perspective on Improving Health Outcomes for People with

Disabilities of All Ages

Dean Karavite, MSIDepartment of Biomedical and Health InformaticsThe 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 karavite@chop.edu 267-426-7805 dbhi.chop.edu