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Development of tools to facilitate palliative and supportive care referral for patients with idiopathic pulmonary fibrosis
  1. Charles Sharp1,
  2. Heather Lamb1,
  3. Nikki Jordan2,
  4. Adrienne Edwards3,
  5. Rachel Gunary4,
  6. Patricia Meek4,
  7. Ann B Millar5,
  8. Clare Kendall2 and
  9. Huzaifa Adamali1
  1. 1Bristol Interstitial Lung Disease service, North Bristol NHS Trust, Bristol, UK
  2. 2Palliative Medicine, North Bristol NHS Trust, Bristol, UK
  3. 3Canterbury District Health Board, Canterbury Respiratory Service, Christchurch, Canterbury, New Zealand
  4. 4Clinical Psychology, North Bristol NHS Trust, Bristol, UK
  5. 5Academic Respiratory Unit, University of Bristol, Bristol, UK
  1. Correspondence to Dr Huzaifa Adamali, Bristol Interstitial Lung Disease Service, North Bristol NHS Trust, Bristol BS10 5NB, UK; huzaifa.adamali{at}


Objectives Palliative care is underused in non-malignant respiratory diseases, including interstitial lung diseases (ILDs). We investigated current practices around palliative and supportive care and explored the impact of a supportive care decision aid tool.

Methods This was a single centre study in a UK ILD centre. Retrospective analysis of hospice referrals and patients with idiopathic pulmonary fibrosis (IPF) under the Bristol ILD (BILD) service were used to identify unmet palliative and supportive care needs. Using quality improvement methodology, we explored the impact of a supportive care decision aid on clinician behaviours for patients with ILD.

Results 108 patients with ILD were referred for hospice care between 2010 and 2015, representing 0.15% of all referrals, compared with a population prevalence of IPF of 0.9%. The median interval between referral and death was 124 days.

Records were reviewed for 64 deceased and 89 living patients with IPF seen on July–December 2014. The decision aid was prospectively assessed with 73 patients. The deceased patients had greater markers of severity. There were no other differences between the groups.

After introduction, the decision aid tool was completed for 49.3% of patients and resulted in significant increases in documented discussion of referral to palliative care (11.2%vs53.6%, p<0.01) and end-of-life discussions (15.7%vs91.8%, p<0.01). Tool completion led to an increase in referral for palliative care (2.7%vs16.7%, p<0.01).

Conclusion Palliative care services are underused in ILD and a supportive care decision aid can prompt consideration of palliative and supportive care needs.

  • interstitial Lung Disease
  • non-malignant respiratory disease
  • supportive care
  • chronic conditions
  • clinical decisions

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  • Contributors CS, ABM, CK and HA conceived and designed the study. CS, HL, AE and HA collected the data. CS performed the data analysis. All authors participated in tool development and refinement and in writing and approving the manuscript.

  • Competing interests None declared.

  • Ethics approval East of England Research Ethics Committee (RECreference 15/EE/0023).

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