(77) Improving Transition from Pediatric to Adult Cystic Fibrosis Care: A Quality Improvement Initiative

Background: As the age of survival advances in cystic fibrosis (CF), there are now more adult than pediatric patients, signifying a need to prepare a smooth transition. The UCSF Pediatric CF transition program uses a binder, age-based checklist and goals, and quarterly meetings with the adult team for those > 8 years old. Since the implementation of the program 8 years ago, there has been changes in the CF team staffing, including loss of a transition coordinator and hiring of new team members. The aim of our QI was to assess the effectiveness and identify such gaps to provide a smooth transition with the current CF Transition Program.

Methods: A needs assessment survey was distributed to CF care providers and families. Families were categorized based on age (8-12 years, 13-17 years, 18-21 years, and >22 years old). Parents of children 13-17 and 18-21 years old were given a survey, which collected data on patient and provider awareness and satisfaction with the program.

Results: Provider survey results (n=12) showed one of the biggest challenges is not having enough time to discuss transition and not understanding their role in the transition process. 72% of providers do not use the checklists; 75% (n=8) recommended discussing transition goals during weekly huddle and having a transition coordinator would overcome barriers. Providers identified the need to train new staff, update the content of our program checklists, create a system for documenting and tracking transition progress in the electronic medical record, tailor transition goals to the individual needs of patients, and foster enhanced patient/family engagement.

Data collection is ongoing. The 8-12 year age group had 4 responses: 75% (n=3) were not aware of the transition program. The 13-17 year age group had 5 patient responses: all were either fully aware (n=1, 20%) or somewhat aware of the program (n=4, 80%), and all respondents (n=5, 100%) felt the program helped them build their skills, although not all felt their goals were meeting their needs (n=1, 20%). Each one started to take some ownership of their care. Of the 18 through 21 year old group, there were 9 respondents. All were either fully aware (n=4, 44%) or somewhat aware of the program (n=5, 56%), most were either very satisfied with the program (n=4, 44%) or somewhat satisfied with the program (n=2, 22%) and all respondents felt the program was helping them gain skills, most felt comfortable taking their medications and scheduling appointments, but only 11% (n=1) felt ‘ready to transition’. The one response from >22 year old age group showed great satisfaction and full awareness of the program.

Of the parents of the 13-21 year old age group, 20% (1 of 5 respondents) reported not being aware of the program, and 100% reported the program helping their child gain skills to manage their own health and discussing goals during clinic visits.

Conclusions: Surveys identified improvement of the transition program, specifically education of providers and identifying individual roles in preparing patients for transition. Examples of ways to improve implementation include discussing and assigning transition goals in pre-clinic huddle. Patient surveys identified that some families were not aware of the transition program, but those who were aware did feel the program was helpful. We will need to improve awareness of the program amongst our families and use early implementation techniques. Results of these surveys will be used to update aspects of the transition curriculum.

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