Project Summary
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 health problem where red blood cells in the body break down and change shape. The signs and symptoms of SCD vary from person to person and can change over time. Children may have pain and feel tired. Adults may develop more serious symptoms, such as problems with their eyes, kidneys, or heart.
As children with SCD become adults, they begin to take responsibility for their own care. They may rely less on their parents’ help, and they switch from their childhood doctor to one who treats adults. Young adults with SCD are not always ready for these changes. Between the ages of 16 and 25, young adults with SCD are more likely to go to the hospital and face increased risk of dying.
In this study, the research team is comparing three ways to help young adults with SCD manage their disease and use adult healthcare services. One way is by having young adults work with community health workers, or CHWs, who also have SCD and have had training to give support and advice. The second way is using a mobile app called iManage that the research team developed with young adults who have SCD. The third way is the usual care young adults get from their doctors. The team wants to see if CHWs or the app, when compared with usual care, can improve patients’ quality of life, increase patients’ ability to manage their SCD on their own, and reduce how often patients go to the hospital.
Who can this research help?
Results may help clinic directors decide whether to offer CHW or mobile health programs for young adults with SCD.
What is the research team doing?
The research team is enrolling 450 people from five children’s hospitals in four US cities. Study participants are ages 17 and older with SCD who may switch to a doctor for adults within the next 12 months. The team is assigning participants by chance to one of three groups: a six-month CHW program, iManage, or usual care.
Participants assigned to the CHW and iManage groups receive help
- Setting goals
- Developing self-care skills and action plans
- Tracking symptoms
- Transitioning to adult care
Participants in the CHW group also receive support from CHWs through telephone calls and home visits on a weekly basis.
Participants in the iManage group also receive virtual peer support through the iManage app. iManage app users form teams that help each other reach goals. In addition, iManage tracks symptoms and goals and sends participants text messages tailored to their own health goals.
Participants in the usual care group receive regular care from their doctors. Doctors at each study hospital receive a standardized checklist from the research team to use with patients. This checklist helps make sure patients in the usual care group get consistent care across hospitals.
At the start of the study and 6, 12, and 18 months later, the research team is surveying patients to learn about their quality of life and how involved they are in their own care. The team is also looking at electronic medical records and medical claims data to see how often patients go to the hospital.
Young adults with SCD, parents, clinicians, health insurers, and patient advocates help design, plan, and conduct this study.
Research methods at a glance
| Design Elements | Description |
|---|---|
| Design | Randomized controlled trial |
| Population | People ages 17 and older with sickle cell disease who will transition to a hematologist for adults within 12 months |
| Interventions/ Comparators |
|
| Outcomes |
Primary: health-related quality of life Secondary: disease self-management, engagement in the adult healthcare system |
 |
18-month follow-up for primary outcome |
Videos
Improving Outcomes for Young Adults with Sickle Cell Disease
Kim Smith-Whitley, MD—director of the Comprehensive Sickle Cell Center at Children’s Hospital of Philadelphia—shares why this project is focused on improving quality of life for young adults with sickle cell disease who are transitioning from pediatric-focused care to adult-focused care.
Project Details
Other Health Services Interventions
Technology Interventions
Training and Education Interventions
Low Health Literacy/Numeracy
Women
Children -- 18 and under
Individuals with Rare Disease