Transcript Sickle Cell and the Brain - Thalassemia.org the Cooleys

Cooley’s Anemia Foundation
2014 Patient Family Conference
Transition
VS
The Philly Experience
What is Transition?
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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
Cooley’s Anemia Foundation
2014 Patient Family
Conference
June 21, 2014
Janice R Beatty
Diane Calamaras
Lurie Children’s Hospital
Comprehensive Thalassemia Program
Healthcare Transition
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Transition to Adult Oriented Care is challenging
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Teenagers
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Parents
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Increasing responsibilities
Learning independence
Managing own healthcare
Learning to let go
What’s different for thalassemia transition?
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Many adults stay with Pediatric Thalassemia Programs
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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
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4 year program
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starts at age 14 and/or freshman
in high school
Goals:
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to empower adolescents to take responsibility for their
own healthcare needs (‘step up’ to adulthood)
to prepare adolescents to transition to adult-oriented
care
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Specialty care through adult providers at NMH
Hematology care (transfusions, chelation, Thal Team
remains at Lurie)
to enhance thalassemia education
Step Up Program
Components
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Pre Test
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Assesses current knowledge re thalassemia
Given at initial transition comprehensive clinic visit
Knowledge Test
Step Up Program
Components
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Checklist
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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
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Step Up Binder
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Given to adolescent at enrollment visit
Contains:
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contact info
comprehensive pt care plan
health insurance/disability info
thal resources
educational materials
So far....
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Program started July 2008
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16 patients enrolled
Data is collected on:
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Compliance self reporting
Compliance with yearly exams
Serum ferritin values
% completing high school
Analysis shows knowledge deficits
So far....
Compliance with yearly exams
MRI T2*/R2*
100% completed
Bone Density Scan
100% completed
within 1 year – 18 months
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
Ferritins
40% decrease
20% stable
40% increase
So far....
Multiple Choice Pre-Test Questions Frequently Answered Incorrectly
So far....
Checklist Questions with most Knowledge Deficits
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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
ExceptHow to Access Medical Records
What is HIPPA
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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