Reach for the Stars: Maximizing Health and Ability for Adolescents and Young Adults with Chronic Childhood Conditions

Posted on: October 27, 2017

Session description

Health care transition (HCT), the organized progression from pediatric- to adult-focused care, is crucial for persons with chronic childhood conditions. More adolescents with chronic conditions survive into adulthood and have increased risk of adverse events during HCT. Got Transition—an agreement between the Maternal and Child Health Bureau and the National Alliance to Advance Adolescent Health—developed the Six Core Elements of Health Care Transition 2.0, defining components of HCT. Most HCT programs incorporate these elements, but delivery varies. Additional studies are needed to determine the most efficacious HCT interventions. We present two patients. Their mother, a community expert, will provide a caregiver perspective. We introduce two approaches to HCT. One is a clinic dedicated to HCT coupled with a life skills program. The other is a HCT consult service using existing resources to provide education HCT services. Together, these programs provide examples that can be adapted to other settings.

Speakers

Kamala Gullapalli Cotts graduated from Northwestern University Medical School in 1991. She completed her internal medicine residency at The University of Iowa Hospitals and Clinics in 1994. She joined the University of Chicago in 1999. In addition to her involvement in the medical student and resident teaching, she established a clinic for developmentally disabled adults called the Adult Developmental Disabilities Clinic in 2002. She provides primary care for adults with a variety of developmental disabilities including cerebral palsy, autism, seizure disorders, individuals with a variety of genetic disorders including Down syndrome, Williams syndrome, Angelman syndrome….as well as individuals with intellectual disability without an underlying etiology. Her goal is to provide comprehensive quality healthcare for adults with intellectual and developmental disabilities as well as reduce barriers by educating trainees to improve their core clinical knowledge in caring for this patient population.

Jessica Gold is a current PGY-4 resident in the Internal Medicine-Pediatrics combined residency at the University of Chicago.  She completed her MD/PhD degree at Jefferson Medical School in Philadelphia.  She plans on pursuing a medical genetics fellowship and focusing on caring for adolescents and adults with biochemical genetic diseases.

Gina Jones is a mom of 2 teenage boys with Pelizaeus Merzbacher Disease (PMD) which causes multiple developmental and physical challenges. As a registered nurse, she has a variety of experience that range from clinical practice in Maternal Child Health to Home Hospice Care. Through the years Gina has become a very active parent leader and disability advocate, passionate about parent and professional partnerships. She serves as a community board member for the Leadership for Urban Primary Care Education and Transformation (LUCENT) program, and she is involved with the Region 4 Midwest Genetics Collaborative and the PMD Foundation. Mrs. Jones is currently Family Faculty with the Illinois Leadership Education in Neurodevelopmental and related Diseases (LEND) program and Family Liaison Specialist with the Division of Specialized Care for Children (DSCC).

Rita Rossi-Foulkes is board certified in both Internal Medicine and Pediatrics and is passionate about improving the care for adolescents and young adults with chronic childhood conditions. Teaching medical students and residents and other learners about this population is another of her passions. She directs the Med-Peds residency program at the University of Chicago and founded the University of Chicago Med-Peds PATHways program (Program for Adolescent and Adult Transition to Health). She enjoys working with professionals, patients and families to develop best practices in caring for this vulnerable population. She graduated from Rush Medical College in 1989 and completed her Internal Medicine-Pediatrics residency at New York Hospital-Cornell Medical Center in 1993. She volunteers at Community Health Center, and Washington Park Clinic, is a medical volunteer at Pitchfork Music festival, raises money for the International OCD Foundation, and plays music with her husband in a classic rock band, Elementary Penguins.

Parag Shah is a board-certified Pediatrician. He received his MD from Albert Einstein College of Medicine in 2001 and completed his Pediatric residency at Children’s Memorial Hospital in 2004. He completed a Health Services Research Fellowship at Northwestern University in 2006 and received his MPH from Northwestern University in 2009. Since 2009, he has been the Medical Director for the Chronic Illness Transition Team at Lurie Children’s Hospital and the Site Leader for the Lurie Hospitalist Program at La Rabida Children’s Hospital. He currently directs the Supporting Adolescents with Independent Life Skills (SAILS) transition clinic at Lurie Children’s Hospital.

 

For information about other sessions, continuing education designations, cost, and registration, see the conference brochure, visit illinoisaap.org/conferences/abc/, or contact Elise Groenewegen at egroenewegen@illinoisaap.com.