Best Practices In Managing Transition To Adulthood for Patients With Sickle Cell Disease

1. Best Practices In Managing Transition To Adulthood for Patients With Sickle Cell Disease Children’s Hospital & Research Center Oakland Comprehensive Sickle Cell Center Kimberly Major,MSW II

2. Overview Of Sickle Cell Disease • 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. Our Program 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. Transition Goals • 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. Foundation for Positive Transition • Multidisciplinary Collaboration • Early identification of patients • Transitional Planning • Patient/family engagement • Transfer of information

6. Transition Process in Sickle Cell • 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 Process in Sickle Cell cont. • 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. Insurance • California Children’s Services (CCS) • MediCal (90%) • Genetically Handicapped Persons Program (GHPP)

9. Transition Brochure

10. Transition Brochure

11. Transition Workshop 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. Systemic Challenges • Interested, competent adult health care providers may be difficult to find • Lack of insurance coverage and reimbursement for care coordination

13. Successes and Challenges • 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

14. Thank you! Questions?