United to Conquer Sickle Cell Disease

Transition Toolkit

Transitioning from pediatric to adult care can be a challenging period for people living with sickle cell disease (SCD). Increased SCD-related morbidity has been demonstrated in 18- to 30-year-olds (time of transition), with the highest rate of acute care encounters and re-hospitalizations in this age group compared to older groups of patients with SCD who would be expected to have increased illness because of increasing disease morbidity that comes with advancing age.

In addition, this immediate time of transition is also associated with an increase in sickle cell-related deaths. These trends are largely attributed to inadequate transitioning of comprehensive medical care. As a way to address these challenges, the Sickle Cell Disease Coalition has cataloged medical, social, and educational information that will assist those going through transition.

We hope that, by providing an informational toolkit, patients with SCD will be able to better self-advocate for their needs as they transition from pediatric to adult care.

Medical

The Medical Section includes a list of medical milestones needed along with resources to provide information about your health and well-being as you move from pediatric to adult care.

This section will also include details on how to develop written Medical Care Plans which include pain action plans as well as documentation of critical medical information necessary for your coordinated comprehensive medical care.

There will be overlap with the Education Section when discussing various aspects of comprehensive medical care related to Sickle Cell Disease (SCD). Lastly, information on current and potential future treatment options (e.g. hydroxyurea, blood transfusions, transplant, etc) based on disease severity will be accessible in this section.

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Education

The Education Section includes a list of key sickle cell-specific information elements you should be aware of about YOUR SCD as you move from pediatric to adult care. Links to additional information will also be available for continued education of SCD overall, so that you can discuss YOUR SCD better with your provider team

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Social

The Social Section includes general expectations that adult healthcare providers will ask of you which may be different from your previous pediatric healthcare providers: Resources to support your transition from pediatric to adult care. This section also has helpful information on other aspects of transitioning to adulthood with a chronic illness, such as resources needed for school post high school, job training, and insurance.

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Spread the Word

The status quo is unacceptable & we are setting out to change it. Join us to #ConquerSCD! www.scdcoalition.org

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