Angie’s Institute

Sickle Cell Anemia Center

Transition to Adult Sickle Cell Care

Sickle Cell Anemia Center Provides Uninterrupted Transition to Adult Sickle Cell Care

Watch how the Music Therapy Program helps educate and empower patients about their sickle cell treatment.

Transition from pediatric to adult sickle cell health care can be a daunting process for parents and young adults. The pediatric and adult sickle cell teams at University Hospitals Rainbow Babies & Children’s Hospital’s Angie Fowler Adolescent & Young Adult Cancer Institute and UH Seidman Cancer Center are committed to making this transition as easy as possible for our patients.

The transition of sickle cell care from childhood to adulthood involves many factors, including:

  • Education
  • Employment
  • Finances
  • Social
  • Personal responsibility

For a young person with sickle cell disease, part of the transition from youth to adulthood also includes preparing for a change in health care providers.

Comprehensive and Coordinated Health Care

We know that transition to adult sickle cell care can be difficult. The goal of transition is to provide health care that is:

  • Comprehensive
  • Uninterrupted
  • Coordinated
  • Developmentally appropriate

Planning and Preparation

Transition of care is a process that occurs over time. Planning and preparation for this transition involves providing parents and adolescents with the knowledge and skills needed to achieve successful transition.

At UH Rainbow Babies & Children’s Hospital, we believe that transition planning is essential for success. We begin the transition planning process early on in the teenage years to allow for complete preparation as patients transition to adult sickle cell care.

Transition to Adult Care Providers

Many topics are covered when preparing adolescents to transition to adult sickle cell care providers, including:

  • Education about sickle cell disease, treatments, complications and preventative health
  • Information about insurance coverage and options after age 18
  • Assistance in creating a portable medical summary
  • Assistance in preparing to schedule appointments
  • Assistance with obtaining a primary care provider
  • Continuing education and vocation information
  • Assistance with medical documentation for supplemental security income (SSI), college and vocational training

Comprehensive Transition Handbook

A comprehensive transition handbook is provided to each patient as they transition from pediatric to adult sickle cell care. This handbook serves as a reference and a place for patients to keep important information. In addition, patients can write down their questions in the transition handbook for health care providers.

The handbook contains:

  • Information on the differences between pediatric and adult care
  • Tips for successful transition
  • An overview of sickle cell disease and possible complications
  • Tips for staying healthy and coping with a chronic illness
  • Tips for health maintenance
  • A resource and phone number list
  • Career and employment information

Celebrate Sickle Cell Transition with Adult UH Providers

It is our hope that the transition from our pediatric to adult sickle cell teams will be smooth. While this transition can be stressful, it is also an exciting time for patients and families.

We celebrate transition each year with a transition party during the summer months. During this time, patients can review general information, meet the adult team members and tour the adult clinic and hospital in order to prepare them for adult care. We are happy to celebrate this journey with our patients and families.