Children’s Hospital & Research Center Oakland
Comprehensive Sickle Cell Center
Kimberly Major,MSW II
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Chronic, genetic blood disorder
Pain
Complications:
*Multi-organ failure
*Chronic Anemia
*Pulmonary Hypertension
*Avascular Necrosis
*Acute Chest Syndrome
*Swelling of hands/legs
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*Increased Infection
*Retinopathy
*Priapism
*Fatigue
*Stroke
*Leg ulcers
Sickle cell population
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N = 732
52% female, 48% male
84% African American;
3% Hispanic; 13%
mixed or other
60% Hb SS; 26% Hb SC;
10% Hb Sbeta+ or 0
Age breakdown
• 33% 0 - 12 years
• 30% 13 - 24 years
• 37% 25+ years
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Catchment area:
culturally and
sociodemographically
diverse Northern
California Region
Serviced by
multidisciplinary
team
Provide care that is:
*Uninterrupted
*Patient-centered
*Flexible
*Comprehensive
*Developmentally appropriate
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Equip youth with tools to assist in
navigating the adult healthcare systems.
Skill building for positive disease self
management and independent living.
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Multidisciplinary Collaboration
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Early identification of patients
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Transitional Planning
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Patient/family engagement
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Transfer of information
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Starting at age twelve (12), patients are
provided with a Transition Brochure.
Annual assessment of transition
readiness starts at age 15.
Staff that bridge pediatric and adult
programs:
-Social worker for ages 15 years and older
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Transition rounds: Pediatric & Adult
Sickle Cell Team meet to discuss patients
eligible for transition.
Formal transition to adult program at
age 21 years.
Celebratory Luncheon- acknowledges
youth’s transition. Youth provided with
certificate of transition to adult program.
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California Children’s Services (CCS)
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MediCal (90%)
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Genetically Handicapped Persons Program
(GHPP)
Annual Sickle Cell Transition Workshop
• Workshop dedicated to youth ages 1523 focusing on common and specfic
themes of transition.
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Individual workshops offered for youth,
parents, and caregivers that provide
information, resources and support
around transition.
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Interested, competent adult health care
providers may be difficult to find
Lack of insurance coverage and
reimbursement for care coordination
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61 patients (48% of target population) have
received introductory transition brochure
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Since 2013, 14 patients have transitioned from
pediatric to adult care using the formal process
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Still need to consistently administer readiness
for transition assessment
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Still need to formally assess patient satisfaction
with transition process
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There is no common definition of “successful”
transition in SCD