PCORI has identified the transition from pediatric to adult care for young adults with sickle cell disease, or SCD, as an important research topic. PCORI launched an initiative in 2016 on Management of Care Transitions for Emerging Adults with Sickle Cell Disease to learn how to improve this care transition. The initiative funded this research project.

This research project is in progress. PCORI will post the research findings on this page within 90 days after the results are final.

What is the research about?

Sickle cell disease, or SCD, is a long-term illness that causes red blood cells in the body to break down and change shape. Doctors often diagnose SCD at birth with a blood test. SCD affects both children and adults. People with SCD may have pain and feel tired. Some may develop more serious symptoms, such as problems with their eyes, kidneys, or heart.

As children with SCD become adults, they start to take charge of their own care. They may rely less on their parents’ help. They may also switch from their childhood doctor to one who treats adults. Young adults with SCD aren’t always ready for these changes. At the same time, many doctors and nurses may not know how to help young adults with SCD transition to adult care. In particular, they may not know about community supports that could help young adults. Between the ages of 16 and 25, young adults with SCD are more likely to go to the hospital and have an increased risk of dying.

In this study, the research team is comparing two ways for pediatric and adult clinics to help patients with SCD transition successfully to adult care. The first is a structured education-based program. The second is a structured education-based program plus a one-on-one, virtual peer mentoring program. Peer mentors have SCD and are between the ages of 26 and 35. They help patients build confidence and learn ways to stay healthy. The team is looking at the effectiveness of using peer mentors to improve patients’ quality of life and decrease emergency room, or ER, visits.

Who can this research help?

Healthcare organizations and health insurers can use findings from this study when considering how to support teens and young adults with SCD as they transition from pediatric to adult care.

What is the research team doing?

The research team is working with 14 sites in eight states to recruit 700 teens and young adults ages 16 to 25 with SCD. Each site includes a pediatric SCD clinic, an adult SCD clinic, and a partner community-based organization, or CBO.

The research team is assigning sites by chance to one of two groups:

Structured education-based program. Staff at each site work together to implement the Six Core Elements of Health Care Transition.™ The Six Core Elements provide a standard process for pediatric and adult clinic staff to support patients with SCD as they transition from pediatric to adult care. As part of the process,

• Clinic staff create a standard policy to guide patients through transition.
• Staff create a method to track patients through their transition.
• Staff assess each patient to find out whether they are ready to transition to adult care.
• Staff work with each patient to create a plan to transition to adult care.
• Patients transition to adult care, with close communication between staff at pediatric and adult clinics.
• Staff monitor each patient to make sure they continue to get care.

Structured education-based program plus peer mentoring. In addition to the structured education-based program, patients are assigned a trained peer mentor for at least two years. Peer mentors have SCD and have successfully transitioned to adult care. Peer mentors attend online and in-person training at partner CBO sites on how to be a peer mentor. Patients and peer mentors communicate by phone or instant messaging using a secure program.

Patients are filling out online surveys at the start of the program and every six months for up to five years. The surveys ask patients about their quality of life, their ability to care for themselves, and their satisfaction with the transition process. The research team is using medical records to look at how often patients go the ER or are admitted to a hospital, and how often they see their SCD and primary care providers. The team is also comparing patients who get care at small or large clinics.

Patients, caregivers, and staff from partner CBOs are working with the research team to help guide the study.

Research methods at a glance