best practices in managing transition to adulthood for patients with sickle cell disease
DESCRIPTION
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. Overview Of Sickle Cell Disease. Chronic, genetic blood disorder Pain Complications : - PowerPoint PPT PresentationTRANSCRIPT
Best Practices In Managing Transition To Adulthood for Patients
With Sickle Cell Disease
Children’s Hospital & Research Center OaklandComprehensive 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
Overview Of Sickle Cell Disease
Our ProgramSickle 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.
Transition Goals
Multidisciplinary Collaboration
Early identification of patients
Transitional Planning
Patient/family engagement
Transfer of information
Foundation for Positive Transition
• 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 Process in Sickle Cell
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.
Transition Process in Sickle Cell cont.
• California Children’s Services (CCS)
• MediCal (90%)
• Genetically Handicapped Persons Program (GHPP)
Insurance
Transition Brochure
Transition Brochure
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.
Transition Workshop
Interested, competent adult health care providers may be difficult to find
Lack of insurance coverage and reimbursement for care coordination
Systemic 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
Successes and Challenges
Thank you!
Questions?