Transitioning from Pediatric to Adult Care with Cystic Fibrosis Needs to be a Team Effort

Transitions to adult care for patients who have a chronic respiratory disease, like cystic fibrosis, or a type of neuromuscular disease that influences the respiratory system is something that the medical community is still trying to figure out. As medicine has advanced and allowed patients with conditions like these to live longer, it appears we have neglected the necessary study of how to successfully move aging children to this new area of care.

In order to avoid adverse outcomes; collaboration, communication, and careful planning are all essential.


It is critical for a patient’s pediatric care team to be in conversation with their future adult team. In a survey, approximately 38% of children’s hospitals had transition initiatives. Fewer than 40% of young adult patients report that they have been provided sufficient preparation for their transition.

Care must be uninterrupted. A break in care is not an option. Therefore, planning and discussion between the two teams and the patient is critical. This process must begin early and work seamlessly until new care is fully established.


Barriers to transferring to adult care are wide-ranging. There can be difficulties with insurance, the complexity of the condition, and individual perceptions of their care team.

Adult care is a whole new world for patients to navigate. Instead of their providers communicating with their parents, all of a sudden they are communicating with them. If they are not prepared for this step, it can be extremely overwhelming.

It can also be difficult to move away from a care team that you have instilled confidence and comfortability in. Reluctance and apprehension to transfer to a different provider is a normal feeling.

Key Elements

Outlined below are 6 key elements, created by The National Alliance to Advance Adolescent Health and the Maternal and Child Health Bureau which will help to improve this process for patients.

  1. Transition policy
  2. Tracking and monitoring
  3. Readiness assessment
  4. Transition planning
  5. Transfer of care
  6. Transfer completion

A full description of these core steps can be found here. Each is an essential part of the process.

While progress has been slow in implementing these steps nationwide, we are making progress. To continue to do so, will require the perseverance and dedication of all involved.

You can read more on this topic here.

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