Literature DB >> 27469604

Limitations to providing adult cystic fibrosis care in Europe: Results of a care centre survey.

Susan Madge1, Scott C Bell2, Pierre-Régis Burgel3, Karleen De Rijcke4, Francesco Blasi5, J Stuart Elborn6.   

Abstract

BACKGROUND: There are a growing number of adults in Europe with a projected increase of 75% over the next decade. There is concern that provision of care will not be sufficient to meet needs. We aimed to establish the level of CF service throughout Europe.
METHODS: An online survey designed by clinicians and patient representatives to explore level of service.
RESULTS: Training opportunities for clinicians and resources (physical and manpower) to provide care to adults with CF are limited in Europe. Although specific adult CF care has been identified, teams continue to be supported by paediatric colleagues and many adults are still being admitted to paediatric wards. In some centres, service delivery, particularly infection control and access to some CF medication is insufficient and in many places poor personnel resources limits access to comprehensive multidisciplinary teams.
CONCLUSIONS: This survey shows an urgent need for the development of resources for adult CF care, in both physical space and appropriately trained clinicians.
Copyright © 2016 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.

Entities:  

Keywords:  Adults; Cystic fibrosis; Eastern Europe; Service provision; Western Europe

Mesh:

Year:  2016        PMID: 27469604     DOI: 10.1016/j.jcf.2016.07.001

Source DB:  PubMed          Journal:  J Cyst Fibros        ISSN: 1569-1993            Impact factor:   5.482


  6 in total

Review 1.  The future of cystic fibrosis care: a global perspective.

Authors:  Scott C Bell; Marcus A Mall; Hector Gutierrez; Milan Macek; Susan Madge; Jane C Davies; Pierre-Régis Burgel; Elizabeth Tullis; Claudio Castaños; Carlo Castellani; Catherine A Byrnes; Fiona Cathcart; Sanjay H Chotirmall; Rebecca Cosgriff; Irmgard Eichler; Isabelle Fajac; Christopher H Goss; Pavel Drevinek; Philip M Farrell; Anna M Gravelle; Trudy Havermans; Nicole Mayer-Hamblett; Nataliya Kashirskaya; Eitan Kerem; Joseph L Mathew; Edward F McKone; Lutz Naehrlich; Samya Z Nasr; Gabriela R Oates; Ciaran O'Neill; Ulrike Pypops; Karen S Raraigh; Steven M Rowe; Kevin W Southern; Sheila Sivam; Anne L Stephenson; Marco Zampoli; Felix Ratjen
Journal:  Lancet Respir Med       Date:  2019-09-27       Impact factor: 30.700

2.  Targeting DNAJB9, a novel ER luminal co-chaperone, to rescue ΔF508-CFTR.

Authors:  Yunjie Huang; Kavisha Arora; Kyu Shik Mun; Fanmuyi Yang; ChangSuk Moon; Sunitha Yarlagadda; Anil Jegga; Timothy Weaver; Anjaparavanda P Naren
Journal:  Sci Rep       Date:  2019-07-08       Impact factor: 4.379

3.  Physiotherapy service provision in a specialist adult cystic fibrosis service: A pre-post design study with the inclusion of an allied health assistant.

Authors:  Kathleen Hall; Lyndal Maxwell; Robyn Cobb; Michael Steele; Rebecca Chambers; Mark Roll; Scott Cameron Bell; Suzanne Kuys
Journal:  Chron Respir Dis       Date:  2021 Jan-Dec       Impact factor: 2.444

4.  Changes in Clinical Markers During A Short-Term Transfer Program of Adult Cystic Fibrosis Patients from Pediatric to Adult Care.

Authors:  Matthias Welsner; Sivagurunathan Sutharsan; Christian Taube; Margarete Olivier; Uwe Mellies; Florian Stehling
Journal:  Open Respir Med J       Date:  2019-06-30

5.  Managing Cystic Fibrosis in Polish Healthcare.

Authors:  Marta Rachel; Stanisław Topolewicz; Andrzej Śliwczyński; Sabina Galiniak
Journal:  Int J Environ Res Public Health       Date:  2020-10-20       Impact factor: 3.390

6.  Standards of Nutritional Care for Patients with Cystic Fibrosis: A Methodological Primer and AGREE II Analysis of Guidelines.

Authors:  Maria G Grammatikopoulou; Tonia Vassilakou; Dimitrios G Goulis; Xenophon Theodoridis; Meletios P Nigdelis; Arianna Petalidou; Konstantinos Gkiouras; Dimitrios Poulimeneas; Olga Alexatou; Kyriaki Tsiroukidou; Georgios Marakis; Zoe Daniil; Dimitrios P Bogdanos
Journal:  Children (Basel)       Date:  2021-12-14
  6 in total

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