using design thinking to enhance the transition to adult ... · using design thinking to enhance...

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

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

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)

Hemoglobin S

• People with Sickle Cell

Disease have an abnormal

Hemoglobin Gene

• Instead of adult

Hemoglobin A gene, they

have Hemoglobin S

• Hemoglobin S genes

make Red Blood Cells

“sickle”

“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

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.)

• 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

Identified Barriers to Transition

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

nt • Attachment to

providers

• Reluctant to transfer responsibility

• Fear of minimized role in adult care

• Concerned about impact of transition on child’s health

er • Not knowing when

patient is “ready”

• Difficulty finding adult providers

• Concerns about patient’s future

• Concerns about adult care setting

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)

NEXT STEPS

PATIENT-PROVIDER INTERFACE

ON-LINE INTERVENTION

using design thinking to enhance the transition to adult ... · using design thinking to enhance...

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