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

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Presentation transcript:

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

 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

Sickle cell population N = % 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% years 30% years 37% 25+ years Catchment area: culturally and sociodemographically diverse Northern California Region Serviced by multidisciplinary team

 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.

 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 programs: -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 (GHPP)

Annual Sickle Cell Transition Workshop Workshop dedicated to youth ages 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