Cooley’s Anemia Foundation 2014 Patient Family Conference

1. Cooley’s Anemia Foundation 2014 Patient Family Conference Transition VS The Philly Experience

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

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

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

13. 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 Freshman • 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