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Improving transition from paediatric to adult cystic fibrosis care: programme implementation and evaluation
  1. Megumi J Okumura1,2,3,
  2. Thida Ong4,
  3. Diana Dawson5,
  4. Dennis Nielson5,
  5. Nancy Lewis5,
  6. Martha Richards5,
  7. Claire D Brindis3,6,
  8. Mary Ellen Kleinhenz7
  1. 1Division of General Pediatrics, University of California, San Francisco, California, USA
  2. 2Division of General Internal Medicine, University of California, San Francisco, California, USA
  3. 3Phillip R. Lee Institute for Health Policy Studies, University of California, San Francisco, California, USA
  4. 4Division of Pediatric Pulmonology, Department of Pediatrics, Seattle Children's Hospital, University of Washington, Seattle, Washington, USA
  5. 5Division of Pediatric Pulmonology, University of California, San Francisco, California, USA
  6. 6Division of Adolescent Medicine, University of California, San Francisco, California, USA
  7. 7Division of Pulmonary, Critical Care, Allergy-Immunology and Sleep Medicine, Department of Internal Medicine, University of California, San Francisco, California, USA
  1. Correspondence to Dr Megumi J Okumura, Department of Pediatrics, University of California, San Francisco, 3333 California Street, STE 245, San Francisco, CA 94118, USA; Okumuram{at}peds.ucsf.edu

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 and methods 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.

  • Transitions in Care
  • Patient Education
  • Quality Improvement

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