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Using Design Thinking to Enhance the
Transition to Adult Care in Pediatric
Sickle Cell Disease
Lori E. Crosby, PsyD
Associate Professor
Behavioral Medicine & Clinical Psychology
NHLBI Grant#: 1K07HL108720 ©Lori E. Crosby, PsyD; Cincinnati Children’s
Hospital Medical Center & Live Well Collaborative
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Overview
• Background on transition in pediatric sickle cell
disease
• Describe a qualitative research study conducted
with the Livewell Collaborative
• Describe 3 patient-oriented tools currently being
refined and tested
• Benefits of using design thinking in research
studies
– Livewell Collaborative
– CCTST Design Thinking Awards
©Lori E. Crosby, PsyD; Cincinnati Children’s
Hospital Medical Center & Live Well Collaborative
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Sickle Cell Disease (SCD)
• Sickle Cell Disease is a
genetic blood disorder
that primarily affects
individuals of African and
Mediterranean descent
• In the U.S., approximately
1 in 500 African
Americans and 1 in 1000
Hispanics/Latinos are
born with the disease
(NHLBI)
©Lori E. Crosby, PsyD; Cincinnati Children’s
Hospital Medical Center & Live Well Collaborative
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Hemoglobin S
• People with Sickle Cell
Disease have an abnormal
Hemoglobin Gene
• Instead of adult
Hemoglobin A gene, they
have Hemoglobin S
genes
• Hemoglobin S genes
make Red Blood Cells
“sickle”
©Lori E. Crosby, PsyD; Cincinnati Children’s
Hospital Medical Center & Live Well Collaborative
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“Sickled” red blood cells clog vessels and the blood
flow to organs, resulting in pain and other features
of Sickle Cell Disease
Sickle
Normal
5 ©Lori E. Crosby, PsyD; Cincinnati Children’s
Hospital Medical Center & Live Well Collaborative
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Management of SCD
• SCD requires a substantial amount
of self-management
• Treatment regimens may include
daily medications (Penicillin, Ex-
Jade, Hydroxyurea), monthly
transfusions, immunizations (Flu,
Prevnar, etc.) and regular
screenings (eye exam, dental,
brain MRI, etc.)
©Lori E. Crosby, PsyD; Cincinnati Children’s
Hospital Medical Center & Live Well Collaborative
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• Late adolescence is a vulnerable time period when the
potential for complications increases, treatment adherence
typically decreases, and mortality rates increase1
• Studies have reported
mortality rates as high
as 20% within 10 years
of transitioning to the
adult healthcare system2
Transition Adds Additional Challenges
1Hassel, 2010 2Aduloju, 2008; Ballas & Dampier, 2004
©Lori E. Crosby, PsyD; Cincinnati Children’s
Hospital Medical Center & Live Well Collaborative
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Identified Barriers to Transition
Pati
en
t • Attachment to providers
• Fear that adult providers might not understand their needs
• Reluctance to assume responsibility (being treated like an adult)
• Concerns about payment for the cost of care
Pare
nt • Attachment to
providers
• Reluctant to transfer responsibility
• Fear of minimized role in adult care
• Concerned about impact of transition on child’s health
Pro
vid
er • Not knowing when
patient is “ready”
• Difficulty finding adult providers
• Concerns about patient’s future
• Concerns about adult care setting
DeBaun & Telfair, 2012 ©Lori E. Crosby, PsyD; Cincinnati Children’s
Hospital Medical Center & Live Well Collaborative
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Larger Study Aims
• To design, refine, and pilot patient and provider tools
to enhance patient self-management and the
transition to adult care.
• To understand the impact of these tools on health and
psychosocial outcomes:
– 1) patient perceptions of patient-provider
communication,
– 2) patient perceptions of transition outcomes (readiness
to transition), and
– 3) health outcomes (disease self-efficacy, quality of life,
disease severity , health utilization)
©Lori E. Crosby, PsyD; Cincinnati Children’s
Hospital Medical Center & Live Well Collaborative
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NEXT STEPS
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Hospital Medical Center & Live Well Collaborative
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PATIENT-PROVIDER INTERFACE
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Hospital Medical Center & Live Well Collaborative
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ON-LINE INTERVENTION
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Hospital Medical Center & Live Well Collaborative
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