Cooley’s Anemia Foundation

2014 Patient Family Conference

VSThe Philly Experience

Transition

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

June 21, 2014Janice R BeattyDiane CalamarasLurie Children’s HospitalComprehensive Thalassemia Program

Cooley’s Anemia Foundation

2014 Patient Family Conference

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

“Stepping Up” to Independence

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

Step Up Program Components

Pre Test Assesses current knowledge re thalassemia Given at initial transition comprehensive clinic visit

Knowledge Test

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

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

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

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 3rd year of program 1 patient is in 1st year of program 3 patients lost to follow-up

MRI T2*/R2*100% completed

Bone Density Scan100% completed

within 1 year – 18 months

Ferritins 40% decrease 20% stable 40% increase

So far....

Multiple Choice Pre-Test Questions Frequently Answered Incorrectly

Freshman

So far....Checklist Questions with most Knowledge Deficits

Overall, knowledge deficit areas improved over the four years each patient was enrolled

Except-How to Access Medical RecordsWhat is HIPPA

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