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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
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
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