A Program Evaluation of a Cystic Fibrosis Transition Program at an Academic Medical Center

Objective: To conduct a program evaluation to evaluate the patient experience with transition from pediatric to adult cystic fibrosis health services and describe the health stability of patients with cystic fibrosis (CF) during the transition process.

Background: The goal of transition is to facilitate continuous and uninterrupted care and support for patients with cystic fibrosis as they transition from pediatric to adult health services. The Cystic Fibrosis Foundation (CFF) advocates for structured health care transition interventions and programs that are linked with increased patient satisfaction, decreased patient anxiety, and increased self-efficacy, all of which increase patient engagement in their own care. Despite this, considerable variability exists regarding the implementation of such interventions among CFF-accredited care centers.

Methods: The Centers for Disease Control and Prevention’s (CDC) Framework for Program Evaluation in Public Health was used to conduct this program evaluation. This program evaluation employed a post-transition survey with quantitative and open-ended questions (n=3) to examine transition readiness, transition-related anxiety, and satisfaction with the transition process. A retrospective chart review was conducted in the electronic health record (n=18) to describe the health stability of patients with CF during the transition process to include number of days between the last pediatric and first adult office in the CF center, adherence to quarterly visits, non-routine office visits, hospitalizations, emergency department visits, and forced end expiratory volume (FEV1) in the year before and after transfer of care.

Results: Due to low participation rates, there was insufficient data to make conclusions on the post-transition survey data. Of three completed surveys, there was consensus on having significant concerns regarding leaving their pediatric team behind and that meeting with their pediatric team without their parents present was very helpful, and strong agreement that patients were satisfied with their care in the pediatric CF center. Data collected from the EHR (n=18) revealed the mean number of days between the last pediatric and first adult CF center to be 68.7 (SD 44.5) and overall adherence to routine appointments was over 85%, indicating continuous, uninterrupted care. Utilization of additional health care services for CF-related illnesses for non-routine office visits, hospitalizations, and emergency department visits remained stable after transition, and FEV1, the primary clinical indicator for CF, was also stable after transition.

Implication for Practice: This scholarly project contributes to the body of knowledge on transition processes and patient outcomes from the perspective of recently transitioned patients in an AMC. Results from this program evaluation intervention are encouraging that existing transition interventions utilized by the CF center are beneficial for patients and that health stability remains steady during the transition process. Recommendations include: administering a shorter post-transition survey that is more specific to this CF center, continuing to implement a more structured and standardized evidenced-based procedure for transition, and re-evaluating health stability measures of recently transitioned patients.