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 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.

Improving the Transition to Adult Care for Young People with Chronic Kidney Disease

“…Examples of comprehensive programs include The Netherlands' national program for transitional care for young people with chronic conditions, ''On Your Own Feet Ahead'' [89,90], and the University of California San Francisco's cystic fibrosis transition program [91]. The latter is a particularly good example of collaborative efforts between pediatric and adult care providers to improve and standardize the transition process resulting in a durable pediatric-adult collaboration and harmonization of care; early evaluation of this pilot project showed a trend toward improved patient readiness for transfer and decreased hospitalization post transfer.…”

“…The latter is a particularly good example of collaborative efforts between pediatric and adult care providers to improve and standardize the transition process resulting in a durable pediatric-adult collaboration and harmonization of care; early evaluation of this pilot project showed a trend toward improved patient readiness for transfer and decreased hospitalization post transfer. A useful mechanism by which to develop a transition program is as a quality improvement initiative [91][92][93][94].…”

Concept Analysis of Health Care Transition in Adolescents with Chronic Conditions

“…There is universal consensus in viewing transition as a process on a continuum, rather than as an isolated, one-time event (AAP, 2013;Anie & Telfair, 2005;Blum et al, 2002;Higgins & Tong, 2003;Hobbie & Ogle, 2001;Kelly et al, 2002;Lewis-Gary, 2001;Okumura et al, 2014;Oskoui, 2012;Pinzon et al, 2004;Reiss & Gibson, 2002;Rosen, 2004;Sawin et al, 1999;Scal, 2002;Soanes & Timmons, 2004;Swallow et al, 2013;Telfair et al, 2004aTelfair et al, , 2004bTowns & Bell, 2010).…”

“…This was identified in six sources (Bates et al, 2003;Callahan et al, 2001;Davis et al, 2014;Luppino et al, 2003;Okumura et al, 2014;Oskoui, 2012;Towns & Bell, 2010). The authors attempted to deliver a caveat that transition is not to be equated with transfer of care.…”

Growing Up and Moving On — Transition of Care for Patients with Childhood-onset Rheumatic Disease

“…A handful of studies have demonstrated a positive effect of disease-specific transition programs on patient or healthcare system outcomes 16,17,18 .…”