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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

Transition

VS

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.). 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
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

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


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

Freshman

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

    • Except-

      • How to Access Medical Records

      • What is HIPPA



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