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Confidence and skills for cystic fibrosis end-of-life care
  1. Eva Harris-Skillman1,
  2. Stephen Chapman1,2,
  3. Aoife Lowney3,
  4. Mary Miller3 and
  5. William Flight2
  1. 1 University of Oxford, Oxford, UK
  2. 2 Oxford Adult Cystic Fibrosis Centre, Oxford University Hospitals NHS Foundation Trust, Oxford, UK
  3. 3 Palliative Medicine, Oxford University Hospitals NHS Foundation Trust, Oxford, UK
  1. Correspondence to Dr William Flight, Oxford Adult Cystic Fibrosis Centre, Oxford University Hospitals NHS Foundation Trust, Oxford OX3 9DU, UK; william.flight{at}


Objectives Optimal cystic fibrosis (CF) end-of-life care (EOLC) is a challenge. There is little formal guidance about who should deliver this and how CF multi-disciplinary teams should interact with specialist palliative care. We assessed the knowledge, experience and preparedness of both CF and palliative care professionals for CF EOLC.

Methods An electronic questionnaire was distributed to all members of the Oxford adult CF and palliative care teams.

Results 35 of a possible 63 members responded (19 CF team; 16 palliative care). Levels of preparedness were low in both groups. Only 11% of CF and 19% of palliative care team members felt fully prepared for EOLC in adult CF. 58% of CF members had no (21%) or minimal (37%) general palliative care training. Similarly, 69% of the palliative care team had no CF-specific training. All respondents desired additional education. CF team members preferred further education in general EOLC while palliative care team members emphasised a need for more CF-specific knowledge.

Conclusions Few members of either the CF or palliative care teams felt fully prepared to deliver CF EOLC and many desired additional educations. They expressed complementary knowledge gaps, which suggests both could benefit from increased collaboration and sharing of specialist knowledge.

  • respiratory conditions
  • terminal care
  • education and training

Data availability statement

Data are available upon request.

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Data availability statement

Data are available upon request.

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  • X @dr_mary_miller, @wgflight

  • Contributors EH-S wrote the first draft of the manuscript. EH-S, SC, AL, MM and WGF contributed to the design of the study and drafting the final manuscript.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; internally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.