1. Children’s Hospital & Research Center Oakland Comprehensive Sickle Cell Center Kimberly Major,MSW II

2.  Chronic, genetic blood disorder  Pain  Complications: *Multi-organ failure *Increased Infection *Chronic Anemia *Retinopathy *Pulmonary Hypertension *Priapism *Avascular Necrosis *Fatigue *Acute Chest Syndrome *Stroke *Swelling of hands/legs*Leg ulcers

3. 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 sociodemographically diverse Northern California Region Serviced by multidisciplinary team

4.  Provide care that is: *Uninterrupted *Patient-centered *Flexible *Comprehensive *Developmentally appropriate  Equip youth with tools to assist in navigating the adult healthcare systems.  Skill building for positive disease self management and independent living.

5.  Multidisciplinary Collaboration  Early identification of patients  Transitional Planning  Patient/family engagement  Transfer of information

6. 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

7.  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.

8. California Children’s Services (CCS) MediCal (90%) Genetically Handicapped Persons Program (GHPP)

11. Annual Sickle Cell Transition Workshop Workshop dedicated to youth ages 15- 23 focusing on common and specfic themes of transition. Individual workshops offered for youth, parents, and caregivers that provide information, resources and support around transition.

12.  Interested, competent adult health care providers may be difficult to find  Lack of insurance coverage and reimbursement for care coordination

13.  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