Literature DB >> 17363858

Transition from paediatric to adult service in epidermolysis bullosa.

Lesley Foster1, Yvette Holmes.   

Abstract

Children with chronic health needs are living longer than they have in the past (Department of Health, 2006) and are becoming adults with complex health needs. This has implications for the health service, which needs to address the arrangements for transfer of young adults from paediatric to adult centres. This article describes the transitional care arrangements established at Great Ormond Street Hospital to address the needs of children with severe epidermolysis bullosa as they move on to adult care. It emphasises the close liaison between paediatric and adult clinical nurse specialists, and recognizes the role of the wider family who also have long-standing links with staff in the paediatric environment and can find transfer to an adult unit traumatic. The article concludes by recognizing that the young adult and specialist teams need to work together to continue the transition process for future generations.

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Mesh:

Year:  2007        PMID: 17363858     DOI: 10.12968/bjon.2007.16.4.22993

Source DB:  PubMed          Journal:  Br J Nurs        ISSN: 0966-0461


  6 in total

1.  Postoperative complications in adults with anorectal malformation: a need for transition. German Network for Congenital Uro-REctal Malformations (CURE-Net).

Authors:  Dominik Schmidt; Ekkehart Jenetzky; Nadine Zwink; Eberhard Schmiedeke; Stefanie Maerzheuser
Journal:  Pediatr Surg Int       Date:  2012-08       Impact factor: 1.827

2.  Youth with special health care needs: transition to adult health care services.

Authors:  Donald P Oswald; Donna L Gilles; Mariel S Cannady; Donna B Wenzel; Janet H Willis; Joann N Bodurtha
Journal:  Matern Child Health J       Date:  2013-12

Review 3.  Psychosocial recommendations for the care of children and adults with epidermolysis bullosa and their family: evidence based guidelines.

Authors:  K Martin; S Geuens; J K Asche; R Bodan; F Browne; A Downe; N García García; G Jaega; B Kennedy; P J Mauritz; F Pérez; K Soon; V Zmazek; K M Mayre-Chilton
Journal:  Orphanet J Rare Dis       Date:  2019-06-11       Impact factor: 4.123

Review 4.  Programmes to support paediatric to adult healthcare transitions for youth with complex care needs and their families: A scoping review.

Authors:  Shelley Doucet; Jennifer Splane; Alison Luke; Kathryn E Asher; Sydney Breneol; Jackie Pidduck; Amy Grant; Emilie Dionne; Cathie Scott; Lisa Keeping-Burke; Jessie-Lee McIsaac; Jan Willem Gorter; Janet Curran
Journal:  Child Care Health Dev       Date:  2022-03-08       Impact factor: 2.943

5.  A population-based registry as a source of health indicators for rare diseases: the ten-year experience of the Veneto Region's rare diseases registry.

Authors:  Monica Mazzucato; Laura Visonà Dalla Pozza; Silvia Manea; Cinzia Minichiello; Paola Facchin
Journal:  Orphanet J Rare Dis       Date:  2014-03-19       Impact factor: 4.123

Review 6.  Multicentre consensus recommendations for skin care in inherited epidermolysis bullosa.

Authors:  May El Hachem; Giovanna Zambruno; Eva Bourdon-Lanoy; Annalisa Ciasulli; Christiane Buisson; Smail Hadj-Rabia; Andrea Diociaiuti; Carolina F Gouveia; Angela Hernández-Martín; Raul de Lucas Laguna; Mateja Dolenc-Voljč; Gianluca Tadini; Guglielmo Salvatori; Cristiana De Ranieri; Stephanie Leclerc-Mercier; Christine Bodemer
Journal:  Orphanet J Rare Dis       Date:  2014-05-20       Impact factor: 4.123

  6 in total

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