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Cooley’s Anemia Foundation 2014 Patient Family Conference. Trans i t i on. VS. The Philly Experience. What is Transition?. tran⋅si⋅tion, [tran-zish- uh n]

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Cooley’s Anemia Foundation

2014 Patient Family Conference



The Philly Experience

what is 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.). Unabridged (v 1.1). from 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
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
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
Step Up Program Components
  • Pre Test
    • Assesses current knowledge re thalassemia
    • Given at initial transition comprehensive clinic visit

Knowledge Test

step up program components1
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 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
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
MRI T2*/R2*

100% completed

Bone Density Scan

100% completed

within 1 year – 18 months


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
so far1
So far....

Multiple Choice Pre-Test Questions Frequently Answered Incorrectly

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
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