Literature DB >> 24415776

Improving transition from paediatric to adult cystic fibrosis care: programme implementation and evaluation.

Megumi J Okumura1, Thida Ong, Diana Dawson, Dennis Nielson, Nancy Lewis, Martha Richards, Claire D Brindis, Mary Ellen Kleinhenz.   

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.

Entities:  

Keywords:  Patient Education; Quality Improvement; Transitions in Care

Mesh:

Year:  2014        PMID: 24415776      PMCID: PMC4449274          DOI: 10.1136/bmjqs-2013-002364

Source DB:  PubMed          Journal:  BMJ Qual Saf        ISSN: 2044-5415            Impact factor:   7.035


  26 in total

Review 1.  Cystic fibrosis and transition to adult medical care.

Authors:  Lisa K Tuchman; Lisa A Schwartz; Gregory S Sawicki; Maria T Britto
Journal:  Pediatrics       Date:  2010-02-22       Impact factor: 7.124

2.  Improving transition from pediatric to adult cystic fibrosis care: lessons from a national survey of current practices.

Authors:  Suzanne Elizabeth McLaughlin; Marie Diener-West; Alka Indurkhya; Haya Rubin; Rebekah Heckmann; Michael Patrick Boyle
Journal:  Pediatrics       Date:  2008-05       Impact factor: 7.124

3.  Supporting the health care transition from adolescence to adulthood in the medical home.

Authors:  W Carl Cooley; Paul J Sagerman
Journal:  Pediatrics       Date:  2011-06-27       Impact factor: 7.124

Review 4.  Improving the transition between paediatric and adult healthcare: a systematic review.

Authors:  R Crowley; I Wolfe; K Lock; M McKee
Journal:  Arch Dis Child       Date:  2011-03-08       Impact factor: 3.791

5.  Comfort of general internists and general pediatricians in providing care for young adults with chronic illnesses of childhood.

Authors:  Megumi J Okumura; Michele Heisler; Matthew M Davis; Michael D Cabana; Sonya Demonner; Eve A Kerr
Journal:  J Gen Intern Med       Date:  2008-07-26       Impact factor: 5.128

Review 6.  Smoothing the transition from pediatric to adult care: lessons learned.

Authors:  Patrick A Flume
Journal:  Curr Opin Pulm Med       Date:  2009-11       Impact factor: 3.155

7.  Transition programs in cystic fibrosis centers: perceptions of team members.

Authors:  Patrick A Flume; Lloyd A Taylor; Deborah L Anderson; Sue Gray; David Turner
Journal:  Pediatr Pulmonol       Date:  2004-01

Review 8.  Promoting better care: transition from child to adult services.

Authors:  Jennifer M Baines
Journal:  Nurs Stand       Date:  2009 Jan 14-20

9.  Perspectives of patients with cystic fibrosis on preventive counseling and transition to adult care.

Authors:  Julie Zack; Carolyn P Jacobs; Peter M Keenan; Kathy Harney; Elizabeth R Woods; Andrew A Colin; S Jean Emans
Journal:  Pediatr Pulmonol       Date:  2003-11

10.  Transition of transplant patients with cystic fibrosis to adult care: today's challenges.

Authors:  Louise Taylor; Anna Tsang; Alison Drabble
Journal:  Prog Transplant       Date:  2006-12       Impact factor: 1.065

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  14 in total

1.  What happens at adolescent and young adult HIV clinics? A national survey of models of care, transition and disclosure practices in Kenya.

Authors:  Irene Njuguna; Kristin Beima-Sofie; Caren Mburu; Danae Black; Yolanda Evans; Brandon Guthrie; Anjuli D Wagner; Cyrus Mugo; Jillian Neary; Janet Itindi; Alvin Onyango; Dalton Wamalwa; Grace John-Stewart
Journal:  Trop Med Int Health       Date:  2020-02-19       Impact factor: 2.622

2.  Longevity of patients with cystic fibrosis in 2000 to 2010 and beyond: survival analysis of the Cystic Fibrosis Foundation patient registry.

Authors:  Todd MacKenzie; Alex H Gifford; Kathryn A Sabadosa; Hebe B Quinton; Emily A Knapp; Christopher H Goss; Bruce C Marshall
Journal:  Ann Intern Med       Date:  2014-08-19       Impact factor: 25.391

Review 3.  Cystic fibrosis.

Authors:  Felix Ratjen; Scott C Bell; Steven M Rowe; Christopher H Goss; Alexandra L Quittner; Andrew Bush
Journal:  Nat Rev Dis Primers       Date:  2015-05-14       Impact factor: 52.329

4.  Interventions for promoting participation in shared decision-making for children and adolescents with cystic fibrosis.

Authors:  Helen Malone; Susan Biggar; Sheila Javadpour; Zai Edworthy; Greg Sheaf; Imelda Coyne
Journal:  Cochrane Database Syst Rev       Date:  2019-05-23

5.  Brazilian guidelines for the diagnosis and treatment of cystic fibrosis.

Authors:  Rodrigo Abensur Athanazio; Luiz Vicente Ribeiro Ferreira da Silva Filho; Alberto Andrade Vergara; Antônio Fernando Ribeiro; Carlos Antônio Riedi; Elenara da Fonseca Andrade Procianoy; Fabíola Villac Adde; Francisco José Caldeira Reis; José Dirceu Ribeiro; Lídia Alice Torres; Marcelo Bicalho de Fuccio; Matias Epifanio; Mônica de Cássia Firmida; Neiva Damaceno; Norberto Ludwig-Neto; Paulo José Cauduro Maróstica; Samia Zahi Rached; Suzana Fonseca de Oliveira Melo
Journal:  J Bras Pneumol       Date:  2017 May-Jun       Impact factor: 2.624

6.  A quality improvement program for adolescents with cystic fibrosis: focus on psychosocial skills.

Authors:  Michele Gérardin; Anne Pesle; Dominique Pougheon-Bertrand; Pilar Léger; Céline Vallet; Tiphaine Bihouee; Valérie David
Journal:  Orphanet J Rare Dis       Date:  2018-02-08       Impact factor: 4.123

7.  Managing the transition from paediatric to adult care for HIV, Kenya.

Authors:  Irene Njuguna; Kristin Beima-Sofie; Caren Mburu; Cyrus Mugo; Danae A Black; Jillian Neary; Janet Itindi; Alvin Onyango; Jennifer Slyker; Laura Oyiengo; Grace John-Stewart; Dalton Wamalwa
Journal:  Bull World Health Organ       Date:  2019-09-13       Impact factor: 9.408

8.  Evaluating outpatient transition clinics: a mixed-methods study protocol.

Authors:  Jane N T Sattoe; Mariëlle A C Peeters; Sander R Hilberink; Erwin Ista; AnneLoes van Staa
Journal:  BMJ Open       Date:  2016-08-26       Impact factor: 2.692

9.  Assessment of transition readiness in adolescents and young adults with chronic health conditions.

Authors:  Paul T Jensen; Gabrielle V Paul; Stephanie LaCount; Juan Peng; Charles H Spencer; Gloria C Higgins; Brendan Boyle; Manmohan Kamboj; Christopher Smallwood; Stacy P Ardoin
Journal:  Pediatr Rheumatol Online J       Date:  2017-09-09       Impact factor: 3.054

10.  Explanation and elaboration of the SQUIRE (Standards for Quality Improvement Reporting Excellence) Guidelines, V.2.0: examples of SQUIRE elements in the healthcare improvement literature.

Authors:  Daisy Goodman; Greg Ogrinc; Louise Davies; G Ross Baker; Jane Barnsteiner; Tina C Foster; Kari Gali; Joanne Hilden; Leora Horwitz; Heather C Kaplan; Jerome Leis; John C Matulis; Susan Michie; Rebecca Miltner; Julia Neily; William A Nelson; Matthew Niedner; Brant Oliver; Lori Rutman; Richard Thomson; Johan Thor
Journal:  BMJ Qual Saf       Date:  2016-04-13       Impact factor: 7.035

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