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Interstitial lung disease and specialist palliative care access: a healthcare professionals survey
  1. Jee Whang Kim1,
  2. Sandra Olive2,
  3. Steve Jones3,
  4. Muhunthan Thillai4,
  5. Anne-Marie Russell5,
  6. Miriam J Johnson6 and
  7. Andrew Wilson1,2
  1. 1 Norwich Medical School, University of East Anglia, Norwich, UK
  2. 2 Department of Respiratory Medicine, Norfolk and Norwich University Hospitals NHS Foundation Trust, Norwich, UK
  3. 3 Action for Pulmonary Fibrosis, Peterborough, UK
  4. 4 Department of Interstitial Lung Disease, Royal Papworth Hospital NHS Foundation Trust, Cambridge, UK
  5. 5 National Heart and Lung Institute, Imperial College London, London, UK
  6. 6 Wolfson Palliative Care Research Centre, ull York Medical School and University of Hull, Hull, UK
  1. Correspondence to Dr Jee Whang Kim, University of East Anglia Norwich Medical School, Norwich NR4 7TJ, UK;{at}


Background Fibrotic interstitial lung disease is an incurable disease with poor prognosis. We aimed to understand factors affecting decisions regarding referrals to specialist palliative care services and to address barriers and facilitators to referrals from healthcare professionals’ perspectives.

Methods A survey study of healthcare professionals, including respiratory physicians, interstitial lung disease nurse specialists, respiratory nurse specialists and palliative care physicians, was conducted using a questionnaire, entailing 17 questions.

Results Thirty-six respondents, including 15 interstitial lung disease nurse specialists completed the questionnaire. Symptom control, psychological/spiritual support, general deterioration and end-of-life care were the most common reasons for referrals to specialist palliative care services. Most respondents felt confident in addressing palliative care needs and discussing palliative care with patients. A few participants emphasised that experienced respiratory nurse specialists are well placed to provide symptom management and to ensure continuity of patient care. Participants reported that access to palliative care could be improved by increasing collaborative work between respiratory and palliative care teams.

Conclusions Most respondents felt that enhancing access to specialist palliative care services would benefit patients. However, palliative care and respiratory care should not be considered as mutually exclusive and multidisciplinary approach is recommended.

  • clinical decisions
  • respiratory conditions
  • communication
  • education and training

Data availability statement

Data are available upon request.

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  • Contributors JWK conceived the study, designed study protocol, developed the survey, extracted data, analysed the data and drafted the manuscript. SO developed the survey and reviewed the manuscript. SJ, MT, A-MR and M-JJ reviewed study protocol and survey development and reviewed the manuscript. AW conceived the study, supervised designing review protocol and reviewed the manuscript. All authors discussed the results and contributed to the final manuscript.

  • Funding This questionnaire survey was funded by Norfolk and Norwich University Hospital Respiratory Research Funds.

  • Competing interests None declared.

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