Sickle Cell and the Brain - Thalassemia.org the Cooleys
Download
Report
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?
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
Transition to Adult Oriented Care is challenging
Teenagers
Parents
Increasing responsibilities
Learning independence
Managing own healthcare
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
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
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
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