Sickle Cell Disease - Criss

Children’s Hospital & Research Center Oakland
Comprehensive Sickle Cell Center
Kimberly Major,MSW II
Chronic, genetic blood disorder
*Multi-organ failure
*Chronic Anemia
*Pulmonary Hypertension
*Avascular Necrosis
*Acute Chest Syndrome
*Swelling of hands/legs
*Increased Infection
*Leg ulcers
Sickle cell population
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
Catchment area:
culturally and
diverse Northern
California Region
Serviced by
Provide care that is:
*Developmentally appropriate
Equip youth with tools to assist in
navigating the adult healthcare systems.
Skill building for positive disease self
management and independent living.
Multidisciplinary Collaboration
Early identification of patients
Transitional Planning
Patient/family engagement
Transfer of information
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
-Social worker for ages 15 years and older
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.
California Children’s Services (CCS)
MediCal (90%)
Genetically Handicapped Persons Program
Annual Sickle Cell Transition Workshop
• Workshop dedicated to youth ages 1523 focusing on common and specfic
themes of transition.
Individual workshops offered for youth,
parents, and caregivers that provide
information, resources and support
around transition.
Interested, competent adult health care
providers may be difficult to find
Lack of insurance coverage and
reimbursement for care coordination
61 patients (48% of target population) have
received introductory transition brochure
Since 2013, 14 patients have transitioned from
pediatric to adult care using the formal process
Still need to consistently administer readiness
for transition assessment
Still need to formally assess patient satisfaction
with transition process
There is no common definition of “successful”
transition in SCD

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