1. Cooley’s Anemia Foundation 2014 Patient Family Conference VS The Philly Experience Trans i t i on

2. What is Transition? tran ⋅ si ⋅ tion, [tran-zish-uh n] –noun 1.movement, passage, or change from one position, state, stage, subject, concept, etc., to another; change: the transition from adolescence to adulthood. transition. (n.d.). Dictionary.com Unabridged (v 1.1). from Dictionary.com website

3. June 21, 2014 Janice R Beatty Diane Calamaras Lurie Children’s Hospital Comprehensive Thalassemia Program Cooley’s Anemia Foundation 2014 Patient Family Conference

4. Healthcare Transition Transition to Adult Oriented Care is challenging Teenagers Increasing responsibilities Learning independence Managing own healthcare Parents Learning to let go What’s different for thalassemia transition? Many adults stay with Pediatric Thalassemia Programs  Continue to receive transfusions at Pediatric Centers  Lurie Children’s- Adults stay at Lurie to receive care & transfusions - Specialty Care is by Adult Providers at NMH

5. “Stepping Up” to Independence

6. Step Up Program 4 year program starts at age 14 and/or freshman in high school Goals: to empower adolescents to take responsibility for their own healthcare needs (‘step up’ to adulthood) to prepare adolescents to transition to adult-oriented care Specialty care through adult providers at NMH Hematology care (transfusions, chelation, Thal Team remains at Lurie) to enhance thalassemia education

7. Step Up Program Components Pre Test Assesses current knowledge re thalassemia Given at initial transition comprehensive clinic visit Knowledge Test

8. Step Up Program Components Checklist Interdisciplinary checklist reviewed with adolescent & parent(s) at each yearly comprehensive visit Measures core competencies, progress & identifies educational gaps Healthcare Checklist

9. Step Up Program Components cont’d Step Up Binder Given to adolescent at enrollment visit Contains: contact info comprehensive pt care plan health insurance/disability info thal resources educational materials

10. So far.... Program started July 2008 16 patients enrolled Data is collected on: Compliance self reporting Compliance with yearly exams Serum ferritin values % completing high school Analysis shows knowledge deficits

11. So far.... Compliance with yearly exams 16 patients enrolled 6 patients graduated from the program 5 patients are in last year of program 1 patient is in 3 rd year of program 1 patient is in 1 st year of program 3 patients lost to follow-up MRI T2*/R2* 100% completed Bone Density Scan 100% completed within 1 year – 18 months Ferritins 40% decrease 20% stable 40% increase

12. So far.... Multiple Choice Pre-Test Questions Frequently Answered Incorrectly

13. Freshman So far.... Checklist Questions with most Knowledge Deficits What meds are for How to fill prescriptions How to contact Hematology team Who Specialty Providers are How to make appointments How to access medical records What is HIPPA Overall, knowledge deficit areas improved over the four years each patient was enrolled Except- How to Access Medical Records What is HIPPA

14. We believe, even though our adolescents stay at Lurie Children’s & continue to receive hematology care as adults, this program will assist them to become independent adults armed with knowledge about thalassemia and able to meet their health care needs