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
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 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.
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