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

J Cyst Fibros. 2017 Jan;16(1):85-88. doi: 10.1016/j.jcf.2016.07.001. Epub 2016 Jul 26.


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.

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

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Child
  • Cystic Fibrosis* / epidemiology
  • Cystic Fibrosis* / therapy
  • Delivery of Health Care* / methods
  • Delivery of Health Care* / organization & administration
  • Delivery of Health Care* / standards
  • Europe / epidemiology
  • Female
  • Health Care Rationing* / standards
  • Health Care Rationing* / statistics & numerical data
  • Health Care Surveys
  • Humans
  • Infection Control / organization & administration
  • Male
  • Needs Assessment
  • Quality of Health Care
  • Transition to Adult Care / organization & administration