Improving Pediatric to Adult Care Transitions (ImPACT) Program

• Transition is preparation for the change from pediatric care (where parents make most of the decisions) to adult care (where the patient takes responsibility for decision-making).
• Transfer is the process of identifying an adult provider, transferring all appropriate medical records to them and communicating the unique needs of the patient to the adult provider. This process requires collaboration and communication among the patient, their family and the healthcare teams.

Transition discussions between the patient, parents or caregivers and doctors typically begin between the ages of 12 and 14. Care teams share transition guidelines at this time and the full transition process spans several years until patients are 18 to 21 years old. The transition to adult healthcare should include the patient, their family and the healthcare team so everyone understands the expectations of the adult healthcare setting. Chronic conditions usually require more collaboration. Learn more about transitioning a child with a chronic illness.

• When a child transitions to adult care depends on their readiness, if they see a specialty clinic and if an adult care specialist is available. Some specialties have a general plan for the timing of transition based on the conditions they treat and others will have more specific guidelines.
• We encourage transition to adult care no later than a patient’s 22nd birthday. However, under some circumstances, we may recommend continuing care with us as an adult. In these rare situations, we may provide an adult model of care instead of suggesting they transfer to an adult healthcare facility. Talk to your child’s specialists about their policies and procedures related to transition to adult healthcare and make sure that your child’s primary care provider is also part of the conversation.

• Age 11 and younger: Parents should model self-care in health activities and use simple pictures to explain health concepts and practice problem solving for both routine health and specific health conditions. Use this checklist to help you prepare.
• Age 12 to 13: Parents should promote increased independence and core knowledge of activities related to their health and condition. Use this checklist to help you prepare.

• Age 14 to 17: Parents, providers and teens should begin discussing readiness for transition and encourage increased independence in activities related to their health. Use this checklist to help you prepare.
• Age 18: Many legal changes related to insurance and access to medical information and records occur at this age. Young adults should be fully involved in their own medical care. Make adjustments as needed for those with conditions that prevent them from making healthcare decisions.
• Age 19 to 21: Most young adults will successfully transfer to an adult healthcare team. Some young adults may receive medical care in both pediatric and adult healthcare facilities.

As a child enters their teen years, the medical team will move from talking to parents and caregivers to talking directly with the teenagers.

Many young adults still may involve their families in their healthcare decisions. Our team will encourage teens and young adults to become more involved in their own medical decisions and health management in preparation for taking primary responsibility for their healthcare. Care teams and parents will make adjustments for patients with intellectual disabilities or special healthcare needs.

The process is individualized based on the young adult's ability to manage their own healthcare but we still aim to transition them to adult care by their 22nd birthday.  

Learn tips for families with teens with a developmental disability.

Learn tips for families with teens with a developmental disability (Spanish).

During visits, older kids and adolescents will learn more about their condition, medication and the tasks associated with taking care of their health, such as scheduling regular clinic visits and ordering prescription refills.

Teenagers are best prepared to manage their healthcare when parents encourage them to ask questions and take on an active role.

We encourage parents to shift from ‘doing’ to ‘coaching,’ by asking their child questions and providing guidance. This will help ease this transition and build confidence in self-care skills. Some ways to support children include:

• Encourage teens to schedule their own medical visits, check in when they arrive and spend time with their provider without a parent or caregiver present.
• Discuss the division of responsibility for healthcare tasks.
• Gradually increase expectations for adolescents’ responsibility in their healthcare while continuing to supervise these tasks. One strategy is to have the youth ‘watch,’ then ‘practice with support,’ then ‘do’ a medication refill or schedule an appointment.

Look at these helpful resources:

• Help your child be their own healthcare advocate.
• Help your child be their own healthcare advocate (Spanish).
• Understanding prescription medication and ordering their own refills.
• Understanding prescription medication and ordering their own refills (Spanish).

When patients turn 18, they take charge of making their own healthcare decisions. They become — legally — the only person who can access their medical information unless families document permissions in the medical record. This includes access to MyChart and other healthcare platforms where patients can communicate directly with providers, check labs and schedule appointments. Young adults 18 and older become the sole decision-makers about their healthcare and the sharing of personal health information. Only with the young adult’s written permission can healthcare providers discuss any personal health information with family members.

A range of options can assist in decision-making after age 18. The least restrictive is a signed consent form at the hospital, and the most restrictive option is legal guardianship. If young adults need support in making healthcare decisions, disability groups in each state can help guide you to legal resources. Explore these resources:

• Medical Decision-Making During Transition to Adult Care
• Medical Decision-Making During Transition to Adult Care (Spanish)
• Guardianship Alliance of Colorado
• Colorado Guardianship Self-Help Center

Many specialty clinics at Children’s Colorado have processes to assist their patients with specific disease transitions and transfer to adult care. These programs align with our ImPACT transition program so there is consistency within departments if your child is seen in more than one specialty. Ask your care team in the clinics you attend about their processes for supporting patients during the transition to adult care.

Transition can come with additional stress and challenges for some teens and families. Consider reaching out to your medical team to obtain additional support, particularly the psychosocial providers on the team.

If teens are having significant difficulty with aspects of the transition process (such as adherence, emotional health or coping with a diagnosis), it may be helpful to consider getting additional support from specialists. These can include pediatric psychologists, social workers or other behavioral health providers who can provide additional support to teens and help them develop strategies to cope with challenges related to transition.

National resources

• Got Transition Youth and Young Adults
• Got Transition Parents and Caregivers