Chronic disease and the transition to adulthood
Jan 26, 2018, 9:57:55 AM CST Jun 8, 2018, 12:55:37 PM CDT

Chronic disease and the transition to adulthood

How you can help your young adult feel empowered in their health care

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Doctor speaking with teen patient Doctor speaking with teen patient

For teens with a chronic disease, the transition to adult care can be a tricky one. They may face a number of changes that impact their health care including changes in insurance, transitioning from a pediatric specialist to an adult specialist, and when over the age of 18 -- being responsible for their own care decisions. These changes can bring confusion and often leave both the patient and the parent questioning how best to navigate.

Stages of transition

Ashley Sadlon, Director of the Office of Patient Transition at Children’s Health℠, says a young adult’s transition process looks different depending on their needs. In general, parents can expect the transition to move through a couple of stages.

Transition initiation: ages 12 to 17

During the first phase of transition, a child’s health care team begins to introduce the concept that the teen will one day be responsible for their care. When this initiation starts depends on the child’s abilities, when they were diagnosed with their condition and whether their condition is currently stable.

During this phase, a child will become more responsible for their care and begin to learn:

  • The name and details of their condition
  • What medicine they take, including when to take medicines
  • How to talk about their medical history
  • Signs and symptoms that their condition is changing

Sadlon says it can be difficult for parents who have always been involved in their child’s care to begin this transition. However, it is important that parents recognize that their invaluable support continues to be a vital component throughout this process and to reinforce the skills and knowledge that the teen gains.

Parents can take small steps to help their teen gain independence by:

  • Allowing the teen to talk about their medical history and ask questions during an appointment
  • Teaching the teen how to fill prescriptions
  • Teaching the teen how to schedule a doctor’s appointment
  • Teaching the teen what to do in a medical emergency

Throughout this process, the medical team and family work together to help the teen understand what health care responsibilities they will have as an adult and develop tools to make the transition seamless.

Transition to adult care provider: ages 18 to 21

“At the age of 18, teens become legal adults who then become responsible for the consenting of treatment and making medical decisions,” says Sadlon. “By the nature of their age at 18, they should receive an adult model of care, but they may stay with a pediatric physician until there is a plan for their care wherever they are.”

Sadlon says a variety of factors can influence the transition of care from pediatrics to adult – if they are stable, if they are going to college or if they have developmental challenges.

“One additional factor is the ability to find an adult provider who is a trained specialist in treating an adult with a chronic pediatric-onset condition,” says Sadlon. “It is important to find someone who has experience treating a condition that started in childhood.”

During this time, parents and the care team can help the young adult:

  • Find a qualified adult care physician
  • Plan for changes in insurance
  • Learn about health and wellness behaviors
  • Seamlessly transition care

After years of communication, planning and teamwork, your child should experience a safe, smooth transition that will help ensure a healthy adulthood.

Other aspects of health care transition

At Children’s Health, the Office of Patient Transition works with parents and teens twice a year through daylong Transition Workshops, connecting patients to clinical experts and community partners who can help them gain independence and continue to manage their conditions.

“The medical transition is just one piece of this larger transition to adulthood for patients and families,” says Sadlon. “It’s an exciting time, and there are a lot of challenges.”

At the workshop, families can connect with community resources including nonprofit organizations, schools and state agencies. These organizations provide support outside of the medical setting, helping parents and teens address all aspects of living as an adult.

Learn more

Learn more about the transition to adulthood and how Children’s Health can help your teen stay safe and healthy.

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