best practices in managing transition to adulthood for patients with sickle cell disease

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?