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Original Article
Advance care planning for patients with chronic respiratory diseases: a systematic review of preferences and practices
  1. Lea J Jabbarian1,
  2. Marieke Zwakman2,
  3. Agnes van der Heide1,
  4. Marijke C Kars2,
  5. Daisy J A Janssen3,4,
  6. Johannes J van Delden2,
  7. Judith A C Rietjens1,
  8. Ida J Korfage1
  1. 1Department of Public Health, Erasmus University Medical Centre, Rotterdam, The Netherlands
  2. 2Julius Center for Health Sciences and Primary Care, University Medical Center, Utrecht, The Netherlands
  3. 3Department of Research and Education, Centre of Expertise for Chronic Organ Failure (CIRO), Horn, The Netherlands
  4. 4Centre of Expertise for Palliative Care, Maastricht University Medical Centre (MUMC+), Maastricht, The Netherlands
  1. Correspondence to Lea J Jabbarian, Department of Public Health, Erasmus University Medical Centre, 3000 CA, Rotterdam, The Netherlands; l.jabbarian{at}erasmusmc.nl

Abstract

Background Advance care planning (ACP) supports patients in identifying and documenting their preferences and timely discussing them with their relatives and healthcare professionals (HCPs). Since the British Thoracic Society encourages ACP in chronic respiratory disease, the objective was to systematically review ACP practice in chronic respiratory disease, attitudes of patients and HCPs and barriers and facilitators related to engagement in ACP.

Methods We systematically searched 12 electronic databases for empirical studies on ACP in adults with chronic respiratory diseases. Identified studies underwent full review and data extraction.

Results Of 2509 studies, 21 were eligible: 10 were quantitative studies. Although a majority of patients was interested in engaging in ACP, ACP was rarely carried out. Many HCPs acknowledged the importance of ACP but were hesitant to initiate it. Barriers to engagement in ACP were the complex disease course of patients with chronic respiratory diseases, HCPs’ concern of taking away patients’ hopes and lack of continuity of care. The identification of trigger points and training of HCPs on how to communicate sensitive topics were identified as facilitators to engagement in ACP.

Conclusions In conclusion, ACP is surprisingly uncommon in chronic respiratory disease, possibly due to the complex disease course of chronic respiratory diseases and ambivalence of both patients and HCPs to engage in ACP. Providing patients with information about their disease can help meeting their needs. Additionally, support of HCPs through identification of trigger points, training and system-related changes can facilitate engagement in ACP.

Systematic review registration number CRD42016039787.

  • COPD ÀÜ mechanisms
  • cystic fibrosis
  • idiopathic pulmonary fibrosis
  • palliative care
  • psychology
  • pulmonary rehabilitation

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Footnotes

  • Preliminary results have been presented at the 37th Annual North American Meeting of the Society for Medical Decision Making and at the 9th World Research Congress of the European Association for Palliative Care

  • JACR and IJK contributed equally.

  • Twitter Follow Lea J Jabbarian @JabbarianL and @ACPinscience

  • Contributors LJJ and MZ screened and accessed the data. All authors made substantial contributions to the interpretation of the data. LJJ wrote the paper. MZ, AvdH, MK, DJAJ, JJvD, JACR and IJK critically revised the manuscript for important intellectual content. All authors approved the final version to be submitted for publication.

  • Funding This systematic review is part of a larger study about advance care planning in oncology: the ACTION study. The ACTION study (Advance care planning – an innovative palliative care intervention to improve quality of life in oncology) is a collaboration between research teams in the Netherlands, Denmark, Belgium, Slovenia, the UK and Italy. The 7th Framework Programme for Research and Technological Development (FP7) from the European Commission is funding the study (Proposal No: 602541-2).

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

  • Correction notice This article has been corrected since it was published Online First. The following information has now been included. Judith A C Rietjens and Ida J Korfage shared last authorship, based on equal contribution to the manuscript.

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