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. 2022 Feb;36(2):237-253.
doi: 10.1177/02692163211059340. Epub 2021 Dec 17.

Which factors influence the quality of end-of-life care in interstitial lung disease? A systematic review with narrative synthesis

Evelyn Palmer  1   2   3 , Emily Kavanagh  2 , Shelina Visram  3 , Anne-Marie Bourke  1   2 , Ian Forrest  1 , Catherine Exley  3
Affiliations

Which factors influence the quality of end-of-life care in interstitial lung disease? A systematic review with narrative synthesis

Evelyn Palmer et al. Palliat Med. 2022 Feb.

Abstract

Background: People dying from interstitial lung disease experience considerable symptoms and commonly die in an acute healthcare environment. However, there is limited understanding about the quality of their end-of-life care.

Aim: To synthesise evidence about end-of-life care in interstitial lung disease and identify factors that influence quality of care.

Design: Systematic literature review and narrative synthesis. The review protocol was prospectively registered with PROSPERO (CRD42020203197).

Data sources: Five electronic healthcare databases were searched (Medline, Embase, PubMed, Scopus and Web of Science) from January 1996 to February 2021. Studies were included if they focussed on the end-of-life care or death of patients with interstitial lung disease. Quality was assessed using the Critical Appraisal Skills Programme checklist for the relevant study design.

Results: A total of 4088 articles were identified by initial searches. Twenty-four met the inclusion criteria, providing evidence from 300,736 individuals across eight countries. Most patients with interstitial lung disease died in hospital, with some subjected to a high burden of investigations or life-prolonging treatments. Low levels of involvement with palliative care services and advance care planning contributed to the trend of patients dying in acute environments. This review identified a paucity of research that addressed symptom management in the last few days or weeks of life.

Conclusions: There is inadequate knowledge regarding the most appropriate location for end-of-life care for people with interstitial lung disease. Early palliative care involvement can improve accordance with end-of-life care wishes. Future research should consider symptom management at the end-of-life and association with location of death.

Keywords: Interstitial lung disease; death; end-of-life care; palliative care; systematic review.

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Conflict of interest statement

Declaration of conflicting interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Figures

Figure 1.
Figure 1.
Example search strategy for the systematic review.
Figure 2.
Figure 2.
Adapted from Preferred Reporting Items for Systematic Review and Meta-Analyses (PRISMA) 2020 flow diagram. ILD: interstitial lung disease; EOLC: end-of-life care.
See this image and copyright information in PMC

References

    1. Travis WD, Costabel U, Hansell DM, et al.. An official American Thoracic Society/European Respiratory Society statement: update of the international multidisciplinary classification of the idiopathic interstitial pneumonias. Am J Respir Crit Care Med 2013; 188: 733–748. - PMC - PubMed
    1. BLF. What is pulmonary fibrosis?, https://www.blf.org.uk/support-for-you/pulmonary-fibrosis/what-is-pulmon... (2019, accessed 17 August 2020).
    1. Carvajalino S, Reigada C, Johnson MJ, et al.. Symptom prevalence of patients with fibrotic interstitial lung disease: a systematic literature review. BMC Pulm Med 2018; 18(1): 78. - PMC - PubMed
    1. Wuyts WA, Papiris S, Manali E, et al.. The burden of progressive fibrosing interstitial lung disease: a DELPHI approach. Adv Ther 2020; 37: 3246–3264. - PMC - PubMed
    1. NICE NIfHaCE. Idiopathic pulmonary fibrosis in adults: diagnosis and management, https://www.nice.org.uk/guidance/cg163/chapter/Introduction (2017, accessed 6 August 2020). - PubMed

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