Literature DB >> 19563729

Transition and transfer from pediatric to adult care of young adults with complex congenital heart disease.

Alison Knauth Meadows1, Valerie Bosco, Elizabeth Tong, Susan Fernandes, Arwa Saidi.   

Abstract

Many children with complex congenital heart disease are now surviving childhood with the potential to live meaningful and productive adult lives. The process of transitioning or preparing patients and families for transfer from pediatric to adult care is challenging and rarely implemented properly. An inadequate transition process results in delayed and inappropriate care, improper timing of transfer, and undue emotional and financial stress on the patients, their families, and the health care system. At worst, patients are lost to appropriate follow-up. This article discusses the general principles of transition and transfer for young adults with chronic illness, highlights the needs of young adults with congenital heart disease, discusses the barriers to transition, and proposes goals and key elements of a formal transition program.

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Year:  2009        PMID: 19563729     DOI: 10.1007/s11886-009-0042-8

Source DB:  PubMed          Journal:  Curr Cardiol Rep        ISSN: 1523-3782            Impact factor:   2.931


  37 in total

Review 1.  CCS Consensus Conference 2001 update: recommendations for the management of adults with congenital heart disease. Part I.

Authors:  J Therrien; A Dore; W Gersony; L Iserin; R Liberthson; F Meijboom; J M Colman; E Oechslin; D Taylor; J Perloff; J Somerville; G D Webb
Journal:  Can J Cardiol       Date:  2001-09       Impact factor: 5.223

2.  Transition from Pediatric to Adult-Oriented Health Care for the Adolescent with Chronic Illness or Disability.

Authors: 
Journal:  Adolesc Med       Date:  1994-06

3.  Growing up with congenital heart disease: the dilemmas of adolescents and young adults [see comment].

Authors:  E M Tong; P S Sparacino; D K Messias; D Foote; C A Chesla; C L Gilliss
Journal:  Cardiol Young       Date:  1998-07       Impact factor: 1.093

4.  What do adult patients with congenital heart disease know about their disease, treatment, and prevention of complications? A call for structured patient education.

Authors:  P Moons; E De Volder; W Budts; S De Geest; J Elen; K Waeytens; M Gewillig
Journal:  Heart       Date:  2001-07       Impact factor: 5.994

5.  Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine.

Authors:  R W Blum; D Garell; C H Hodgman; T W Jorissen; N A Okinow; D P Orr; G B Slap
Journal:  J Adolesc Health       Date:  1993-11       Impact factor: 5.012

6.  Health care transition: youth, family, and provider perspectives.

Authors:  John G Reiss; Robert W Gibson; Leslie R Walker
Journal:  Pediatrics       Date:  2005-01       Impact factor: 7.124

7.  Health behaviors among adolescents and young adults with congenital heart disease.

Authors:  Graham J Reid; Gary D Webb; Brian W McCrindle; M Jane Irvine; Samuel C Siu
Journal:  Congenit Heart Dis       Date:  2008 Jan-Feb       Impact factor: 2.007

8.  Comorbidity, healthcare utilisation and process of care measures in patients with congenital heart disease in the UK: cross-sectional, population-based study with case-control analysis.

Authors:  J Billett; M R Cowie; M A Gatzoulis; I F Vonder Muhll; A Majeed
Journal:  Heart       Date:  2007-07-23       Impact factor: 5.994

9.  Grown-up congenital heart (GUCH) disease: current needs and provision of service for adolescents and adults with congenital heart disease in the UK.

Authors: 
Journal:  Heart       Date:  2002-09       Impact factor: 5.994

10.  A model for transition from pediatric to adult care in cystic fibrosis.

Authors:  Susan Madge; Mandy Bryon
Journal:  J Pediatr Nurs       Date:  2002-08       Impact factor: 2.145

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  9 in total

1.  Understanding of the transition to adult healthcare services among individuals with VACTERL association in Sweden: A qualitative study.

Authors:  Ann-Marie Kassa; Gunn Engvall; Michaela Dellenmark Blom; Helene Engstrand Lilja
Journal:  PLoS One       Date:  2022-05-27       Impact factor: 3.752

2.  Illness Uncertainty and Posttraumatic Stress in Young Adults With Congenital Heart Disease.

Authors:  Patricia Moreland; Sheila Judge Santacroce
Journal:  J Cardiovasc Nurs       Date:  2018 Jul/Aug       Impact factor: 2.083

3.  Transitioning the adolescent inflammatory bowel disease patient: guidelines for the adult and pediatric gastroenterologist.

Authors:  Yvette Leung; Melvin B Heyman; Uma Mahadevan
Journal:  Inflamm Bowel Dis       Date:  2010-12-16       Impact factor: 5.325

4.  Person-centred transition programme to empower adolescents with congenital heart disease in the transition to adulthood: a study protocol for a hybrid randomised controlled trial (STEPSTONES project).

Authors:  Mariela Acuña Mora; Carina Sparud-Lundin; Ewa-Lena Bratt; Philip Moons
Journal:  BMJ Open       Date:  2017-04-17       Impact factor: 2.692

5.  Primary care during the transition to adult care for adolescents involved with pediatric specialty services: a scoping review protocol.

Authors:  Kyleigh Schraeder; Brooke Allemang; Cathie Scott; Kerry McBrien; Gina Dimitropoulos; Ashley Felske; Susan Samuel
Journal:  Syst Rev       Date:  2021-02-02

6.  Mechanisms of impact and experiences of a person-centred transition programme for adolescents with CHD: the Stepstones project.

Authors:  Markus Saarijärvi; Lars Wallin; Philip Moons; Hanna Gyllensten; Ewa-Lena Bratt
Journal:  BMC Health Serv Res       Date:  2021-06-10       Impact factor: 2.655

7.  Assessing the level of evidence on transfer and transition in young people with chronic conditions: protocol of a scoping review.

Authors:  Mariela Acuña Mora; Philip Moons; Carina Sparud-Lundin; Ewa-Lena Bratt; Eva Goossens
Journal:  Syst Rev       Date:  2016-09-29

8.  Transition from paediatric to adult care of adolescent patients with congenital heart disease: a pathway to optimal care.

Authors:  A M M Strijbosch; R Zwart; N A Blom; B J Bouma; M Groenink; S M Boekholdt; R de Winter; B J M Mulder; A P Backx
Journal:  Neth Heart J       Date:  2016-11       Impact factor: 2.380

9.  Quality indicators for transition from paediatric to adult care for adolescents with chronic physical and mental illness: protocol for a systematic review.

Authors:  Katherine Bailey; Stephanie Lee; Thomas de Los Reyes; Lisha Lo; Jan Willem Gorter; Alene Toulany
Journal:  BMJ Open       Date:  2021-11-01       Impact factor: 2.692

  9 in total

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