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Barriers to specialist palliative care in interstitial lung disease: a systematic review
  1. Jee Whang Kim1,
  2. Chris Atkins2 and
  3. Andrew M Wilson2
  1. 1 Department of Respiratory Medicine, Norfolk and Norwich University Hospital, Norwich, UK
  2. 2 Norwich Medical School, University of East Anglia, Norwich, UK
  1. Correspondence to Dr Jee Whang Kim, Norfolk and Norwich University Hospital, Norwich, NR4 7UY, UK;{at}


Background Current guidelines recommend palliative care based on individual needs for patients with idiopathic pulmonary fibrosis. However, patients with interstitial lung disease (ILD) are less likely to receive specialist palliative care services compared with patients with malignant disease. The aim of this review is to summarise recent studies addressing barriers to referring patients to specialist palliative care services.

Methods PubMed, Embase, Medline and Web of Science were reviewed to identify relevant publications. Studies were selected if they examined the frequency of specialist palliative care referral and/or addressed issues surrounding access to palliative care services for patients with ILD.

Results Ten studies with a total of 4073 people with ILD, 27 caregivers and 18 healthcare professionals were selected and analysed. Frequency of palliative care referrals ranged from 0% to 38%. Delay in palliative care referrals and end-of-life decisions, patients’ fear of talking about the future, prognostic uncertainty and confusion about the roles of palliative care were identified as barriers to accessing palliative care services.

Conclusion Further research should concentrate on the early identification of patients who need specialist palliative care possibly with establishment of criteria to trigger referral ensuring that referrals are also based on patient’s needs.

  • idiopathic pulmonary fibrosis
  • interstitial lung disease
  • palliative care
  • supportive care
  • end-of-life

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  • Contributors JWK conceived of the study, designed review protocol, screened search results, extracted data, performed quality assessment and drafted the manuscript. CA screened search results, extracted data and performed quality assessment independently and reviewed the manuscript. AMW conceived of the study, supervised designing review protocol and drafted the manuscript. All authors discussed the results and contributed to 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.

  • Patient consent Not required.

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