The Adolescent and Young Adult Sickle Cell Uplift and Learn Program for Transition (AYA SCULPT) treats and supports adolescents and young adults with sickle cell disease and empowers them to transition into adult medical care and adulthood.
The Johns Hopkins All Children’s sickle cell transition program, SCULPT, offers patients with sickle cell disease medical and psychosocial care in addition to emotional and educational support. Our team of experts consists of a physician, nurse, psychologist, transition coordinator and a social worker who work closely with patients to create an individualized transition plan.
What is Transition?
Transition is a planned process where patients with sickle cell disease mature into independent adults and transition from child-focused medical care to the adult health care system. The transition process involves medical, psychosocial and educational/vocational needs of adolescents and makes transitioning to work, community and school much easier.
Adolescents with sickle cell disease are living increasingly longer into adulthood. For this reason, transitioning patients must learn to take care of their own health. A transition program, like SCULPT, provides the continuity of health care and support patients need to successfully manage their own health care.
How SCULPT Works
We begin the transition process at age 13 and officially transfer care to adult services at age 21. Our team uses an age-based approach to transitioning our patients and divides them into three groups:
- Ages 13-15. Patients ages 13-15 begin the process of transitioning. Our team introduces them to our transition policy and educates them on sickle cell disease.
- Ages 16-18. Our team provides our older adolescents with a broader understanding of sickle cell disease and prepares them for the next steps after high school.
- Ages 19-21. We support our young adult patients in navigating the medical system and help them prepare for the official transfer into adult medical care and adulthood. Patients who complete our program are celebrated at our annual transition graduation.
In addition to the transition support within our program, our team holds an annual patient education day to help educate our patients, their families and medical providers on sickle cell disease and provide academic resources.
Our team holds several events throughout the year that offer helpful tips and educational resources for patients and families.
Monthly Transition Clinics
Our monthly transition clinics provide patients and their families with transition education and support, including:
- Sickle cell disease education
- Independent self-care practices
- Navigation of complex adult health care systems
- Peer and parental social support
Annual Sickle Cell Transition Day
Our Sickle Cell Transition Day celebrates patients who are graduating from the SCULPT program and provides an opportunity for patients and families to meet and greet with adult health care providers.
Annual Sickle Cell Education Day
Our Sickle Cell Education Day provides patients and caregivers with an interactive educational experience, including learning about health care systems, insurance needs and future career planning.
Our team is dedicated to helping patients with sickle cell disease understand and prepare for the transition to adult health care. That’s why we have provided a variety of resources, including transition checklists, age-appropriate ideas to help children develop independence and more.
Sickle Cell Disease Association of America (SCDAA)
The SCDAA is a non-profit organization that provides the latest sickle cell disease information and the most current news to keep families as healthy and as safe as possible. Any patient with sickle cell disease can join a chapter.
Find a chapter near you>>
Got Transition partners with health professionals and transition programs to provide effective health care transition support to young adults and their families. Find the latest sickle cell disease transition information, tools and resources.
Learn More>> ￼
MyHealth Portal is a secure way to keep track of health care information from Johns Hopkins All Children’s Hospital, Johns Hopkins All Children’s Outpatient Care locations and All Children’s Specialty Physician offices. Find physician instructions, ask questions about a medication, check symptoms, make an appointment and more. You can also access MyHealth Portal through the HealtheLife mobile app available on iTunes.
Parents often wonder how they can help their child live a fulfilling life with sickle cell disease. The SCULPT Timeline provides parents with age-appropriate tasks and ideas to help their children develop independence in a variety of areas, including medically, socially, with family and in school.
Download Sickle Cell Transition Curriculum>>
Transition Readiness Checklists
Find answers to common questions and help prepare for the transition to adult health care.
Download Transition Readiness Checklist for Youth>>
Download Transition Readiness Checklist for Parents>>