Awareness of Birth Defects Across the Lifespan: Adolescence
Transitioning from Pediatric to Adult Medical Care
Adolescents and young adults living with birth defects may face unique challenges as they transition from childhood to adulthood. Transition to adult health care can be tricky for teens and young adults living with a birth defect; they may need to navigate changes in insurance, or transition from a pediatric specialist (whom they may have known all their lives) to an adult specialist. Some may gain responsibility for their own care decisions. It is especially important for people with birth defects and their families to begin planning for this transition during childhood so they can lead healthy, independent lives as adults. Below is a brief description/examples of what adolescents living with certain birth defects may experience as they transition to adult health care:
- At this time, even with improved treatments, many people born with heart defects are not cured even if their heart defect has been repaired. As they grow older, they may need additional medications, surgeries, or other procedures, even after initial childhood surgeries.
- CDC scientists and partners found that children and teens with heart defects commonly had other birth defects as well as problems with breathing, mental health issues, or other heart problems. Teens with more severe types of heart defects were most likely to be admitted to the hospital for care.
- Recent survey data suggest that healthcare providers are communicating about transition with most parents of children with heart defects; however, parents are not receiving information about areas of concern, such as replacing the strong relationship with pediatric providers, locating an adult provider, and accessing adult health insurance coverage.
- Among parents of children with special healthcare needs with heart problems who did not have discussions about transition with their child’s healthcare providers, 2 in 3 parents desired a conversation. Specifically, they sought information on long-term healthcare needs and adult health insurance.
- The Adult Congenital Heart Association offers a clinic directory to help young adults transition out of pediatric care. The directory provides information to help adults manage ongoing care related to their heart defect.
These findings highlight the importance of transitioning services for people with hearts defects who move from pediatric to adult medical care. Ongoing specialty medical care helps people with heart defects have healthier lives.
- The transition period from adolescence to young adulthood can be challenging, especially for people affected by spina bifida. Young adults with spina bifida face many of the same challenges as teens without spina bifida. But they may have more difficulty with mental health, weight control, physical independence, family relationships, and dating behaviors.
- Based on data from the National Spina Bifida Patient Registry, the majority of healthcare providers at spina bifida clinics typically discuss transition with their patients , around age 15. Healthcare providers and their patients regularly address mobility, bowel and bladder management, and transportation needs during these discussions. However, fewer than 2 in 5 clinics report having a written list of skills or knowledge that patients should have prior to the transition to adult care.
- Recent data from the National Spina Bifida Patient Registry also showed that specific sociodemographic, medical, and functional factors were associated with a higher likelihood of attaining employment in early adult life. These factors, such as continence and self-management skills, are an essential component of successful transition to adulthood for adolescents and young adults with complex conditions such as spina bifida.
- The Spina Bifida Association offers resources that can help children, teens, and young adults with spina bifida. This information helps patients and their families find healthcare providers who treat adults with spina bifida:
Starting in childhood, parents and caregivers of teens and young adults with spina bifida should take active steps toward making their children independent. By the time they are older, they can develop the necessary skills to help them reach their full potential and lead independent lives as adults.
- As science and medicine advance, people with Duchenne muscular dystrophy are living longer. Their care throughout life is evolving as well. People born with Duchenne muscular dystrophy will see many healthcare providers throughout their lives because many parts of the body, such as the upper legs, upper arms, heart, and lungs, can be affected.
- Based on data from the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet), 3 in 5 males with Duchenne muscular dystrophy reported discussing transition to adult healthcare providers with their pediatric healthcare providers. However, many adolescent and young adult males living with Duchenne muscular dystrophy don’t have a written transition plan. Having a plan is key to ensuring these individuals receive ongoing, specialty care from adult providers.
- Parent Project Muscular Dystrophy offers resources on transition of care through adulthood. This information includes a transition checklist with questions about individual health needs and goals.
Young adults with Duchenne muscular dystrophy, their families, and their healthcare providers can work together to ensure these individuals receive the care and services they need. These resources help them to stay as healthy, independent, and active as they want to be.
Down Syndrome
- Transitioning from pediatric to adult health care presents questions and concerns for many parents and teens. There are specific challenges for people with Down syndrome, intellectual disabilities, or other special needs. People with Down syndrome may see different types of healthcare providers over their lifetime, as about half of people with Down syndrome are also born with heart defects. They are also more likely to have other health problems including hearing loss, eye issues, and sleep issues.
- Based on data from the National Survey of Children’s Health, most teenagers (aged 12–17 years) with mental, behavioral, or developmental disorders did not receive the recommended transition planning to prepare for the move from pediatric to adult health care.
- Only about 1 in 6 teenagers received the recommended transition planning.
- Teenagers with developmental disorders were less likely than teenagers without developmental disorders to get the recommended transition planning.
- The American Academy of Pediatrics offers healthcare information for families of children with Down syndrome that focuses on health needs of individuals aged 13 to 21 years.
It is important for children, teens, and young adults—including those with Down syndrome—to get early healthcare transition planning. Developing a plan before adulthood helps young adults with Down syndrome get specialized care across their lifespan.
