title: Improving transition from paediatric to adult cystic fibrosis care: programme implementation and evaluation.
abstract: BACKGROUND
  The paradigm of cystic fibrosis (CF) care has changed as effective therapies extend the lives of patients well into adulthood. Preparing for and maintaining high quality CF care into the adult healthcare setting is critical for prolonged survival. Unfortunately, this transfer process from the paediatric to the adult CF centre is met with a variety of challenges.
  
  
  OBJECTIVE
  The objective of this quality improvement (QI) project was to develop, implement and evaluate a theory-based programme for transition from paediatric to adult CF care. In a multi-phase process, the paediatric and adult programmes developed a transition curriculum, addressed care standards and standardised patient transfer protocols. We evaluated the impact of this process through staff surveys, review of field notes from QI meetings, tracking transfers and responses of patients to the Transition Readiness Assessment Questionnaire (TRAQ) at the start of the programme and 18 months after initiation.
  
  
  RESULTS
  The collaboration between the paediatric and adult teams continued through quarterly meetings over the past 4 years. This has provided a forum that sustained our transition programme, harmonised care across CF centres and addressed other needs of our CF centre. Discussion of transition with families in the paediatric centre increased twofold (35% to 73% p<0.001), and resulted in a trend towards improved patient TRAQ self-advocacy scores and decreased in-hospital transfer.
  
  
  CONCLUSIONS
  We successfully created a curriculum and process for transition from paediatric to adult CF care at our centres. This collaboration shapes the communication between our paediatric and adult CF care teams and enables ongoing feedback among patients, families and providers. The impact of our transition programme on long-term patient morbidity will require future evaluation.
authors.affiliation: Division of General Pediatrics, University of California, , San Francisco, California, USA.
authors.forename: Megumi J
authors.initials: MJ
authors.lastname: Okumura
authors.forename: Thida
authors.initials: T
authors.lastname: Ong
authors.forename: Diana
authors.initials: D
authors.lastname: Dawson
authors.forename: Dennis
authors.initials: D
authors.lastname: Nielson
authors.forename: Nancy
authors.initials: N
authors.lastname: Lewis
authors.forename: Martha
authors.initials: M
authors.lastname: Richards
authors.forename: Claire D
authors.initials: CD
authors.lastname: Brindis
authors.forename: Mary Ellen
authors.initials: ME
authors.lastname: Kleinhenz
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D003550:Cystic Fibrosis / Q000503:physiopathology / Q000628:therapy*; D006801:Humans; D005791:Patient Care / Q000379:methods; D010348:Patient Care Team / Q000458:organization & administration*; D016730:Program Development; D015397:Program Evaluation; D058996:Quality Improvement; D011787:Quality of Health Care; D060305:Transition to Adult Care / Q000458:organization & administration*; D014481:United States; D055815:Young Adult
keywords: Patient Education; Quality Improvement; Transitions in Care