Transitioning from Pediatric to Adult Cystic Fibrosis Care

The University of Michigan Cystic Fibrosis Center has had a program in place since 1980 to facilitate the transition of our pediatric patients to adult care in coordination with the Pulmonary Division in Internal Medicine at the University of Michigan. 

At C.S. Mott Children's Hospital our efforts center on preparing our patients for the ultimate transition to adult care and the active transition of patients between care teams.

Preparing for transition

  1. The transition process is introduced to patients and families at time of diagnosis or at their first visit to our center.
  2. As patients get older, the team members gradually shift from interacting with parents to interacting with patients in clinic visits and during inpatient care.
  3. In the early teenage years, the team members focus on reeducation of the teens and families about the disease process and purpose of medications and treatment plan.
  4. Focus on promotion of self-management is led by our social workers and psychologists.  Independent visits are offered and encouraged.
  5. Intervention with the teens and families to help improve adherence to treatment and resolve conflicts is done by social workers and psychologists during clinic visits and hospitalizations.
  6. The adult CF team is an integral part of our annual newsletter and family education function to demonstrate collaboration between the two programs to patients and families.
  7. Social workers evaluate patients for transfer readiness through mid to late teenage years.
  8. In preparation for transition, the pediatric team re-introduces the transition process to patients when they reach their early teens, a time when they are gaining more independence.
  9. Starting at mid teenage years, patients are periodically discussed in the monthly meeting between the pediatric and adult pulmonologists and transition coordinators (social workers).

Active transition process

  1. The transition coordinator and the pediatric pulmonary team discuss the process with the patient and family. The adult pulmonologists are reviewed and a choice of an adult pulmonologist is made.
  2. A patient ready for transition is reviewed in the monthly pediatric-adult CF meeting. Medical records are reviewed by the adult pulmonologist prior to meeting the patient and family.
  3. This is followed by an appointment in the pediatric clinic attended by the pediatric and adult pulmonologist to provide opportunities for interaction between the medical team and patients and families. The adult pulmonologist meets the patient and family with the pediatric pulmonologist in the  pediatric clinic.
  4.  If the patient and family are not ready after this joint clinic session, the session is repeated
  5.  A tour of the adult inpatient and outpatient facilities is offered prior to the transition to adult care until they are ready, for up to three visits.

Recently, we have been adopting the CF Rise Program which is a transition readiness program that has been developed by national experts in CF.

Make an Appointment

To schedule an appointment to discuss cystic fibrosis care at U-M, call us at 734-764-4123.