4 Strategies for Transitioning from Pediatric to Adult Care for People Living with Sickle Cell Disease

September 26, 2023

Black person with afro hair in a ponytail in the front and down in the back with and long sleeve blouse holds books on steps of college campus

Sickle Cell Disease (SCD), an inherited blood disorder that is more prevalent in people of African and Latinx/Hispanic descent, affects approximately 100,000 Americans, and sickle cell trait affects an estimated 2 million individuals. People living with SCD experience acute pain crises, dangerous infections, and other serious health problems that can damage every organ in the body, requiring providers who are knowledgeable and understanding.

Whether attending college or seeking employment, reaching the age of 18 is traditionally a time when young adults is a time when young adults establish their independence from their nuclear family and take responsibility for their own needs. For a young person with special healthcare needs such as SCD, these responsibilities are compounded by the additional need to transition from pediatric to adult care.

While this time can be stressful, existing support resources are available. Check out GOT Transition, a national resource center dedicated to health care transition, and review NICHQ's Compendium of Tools and Resources for resources to help both the individual young person, as well as their family through the health care transition process. 

Read more for four helpful strategies for transitioning from pediatric to adult care for people living with sickle cell disease and other special health conditions. 

1. Begin the process early

Setting up accommodations, such as a 504 Plan or IEP, while still in high school, allows a student living with SCD to receive the support needed to be successful in the classroom. These accommodations can allow for extended test-taking time, additional time to get to class, and other supportive measures that may be required. Having accommodations in place prior to enrolling in college is helpful, and can provide a smoother transition when setting up college accommodations. Additionally, adolescents and young adults living with SCD should begin asking questions of their care providers in preparation for the transition. Work with them to put together a plan that outlines pain management, obtain copies of medical records, and establish a network of local providers who are equipped to manage the care needs of someone living with SCD.

2. Practice self-advocacy

Children with special health needs often have more experience with self-advocacy than others, but it is still important to help them become comfortable advocating for their own needs, with parental or caregiver support, whether academic or medical accommodations are needed. When arriving on campus, students will need to make arrangements with the Campus Accessibility Office and Office of Academic Accommodations and inform their individual professors of the accommodations that are in place so that they can be taken advantage of. Typically, instructors change more frequently than in prior schooling, and it can be challenging to establish a set of norms. It's important to ensure that each semester, new professors are aware of the support needs required for students with sickle cell disease and understand the impacts of pain crises and hospitalizations on attendance, deadlines, and more. considerations that may 

3. Make community connections and find your network

The Sickle Cell Disease Association of America (SCDAA) offers a database that can help people living with SCD find state and local organizations that support sickle cell patients across the country. When relocating, it can be beneficial to reach out to organizations in the new community that may be helpful in building a network of trusted providers and resources. Many local organizations also provide transportation assistance for appointments, employment opportunities, support groups and counseling services, and even financial assistance for prescription medication and other needs. In addition to local community-based organizations, seeking out other young people and adults with SCD in the new campus community can help create a safe space to offer advice, support, and share common experiences. During this transitional stage of life, there's invaluable knowledge within the community.

4. Research scholarships and funding support 

There are a variety of scholarships available to help support students living with SCD and other chronic conditions both nationally and locally. Taking advantage of scholarship opportunities can help lighten the load for students and allow them to focus on staying healthy and completing school, rather than working full or part-time.  Organizations such as EveryLife Foundation and MTS Sickle Cell Foundation, INC., offer scholarships for students with SCD and other rare diseases. Begin applying early for scholarships and grant opportunities to support your college education, and research potential opportunities within the university system that you've chosen. 

To hear more strategies for transition from pediatric to adult care and to learn about NICHQ's continued efforts to improve care and access to resources and support for people living with SCD, listen to NICHQ's Before Birth & Beyond E6: Sickle Cell Awareness Month: Transitioning to College, Equity Considerations, and Resource Sharing.