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How long do patients with chronic disease expect to live? A systematic review of the literature
  1. Barnaby Hole1,
  2. Joseph Salem2
  1. 1Department of Renal Medicine, Southmead Hospital, Bristol, UK
  2. 2Department of Medicine, University of Bristol, Bristol, UK
  1. Correspondence to Dr Barnaby Hole; Barnaby.hole{at}nbt.nhs.uk

Abstract

Objective To systematically identify and summarise the literature on perceived life expectancy among individuals with non-cancer chronic disease.

Setting Published and grey literature up to and including September 2016 where adults with non-cancer chronic disease were asked to estimate their own life expectancy.

Participants From 6837 screened titles, 9 articles were identified that met prespecified criteria for inclusion. Studies came from the UK, Netherlands and USA. A total of 729 participants were included (heart failure (HF) 573; chronic obstructive pulmonary disease (COPD) 89; end-stage renal failure 62; chronic kidney disease (CKD) 5). No papers reporting on other lung diseases, neurodegenerative disease or cirrhosis were found.

Primary and secondary outcome measures All measures of self-estimated life expectancy were accepted. Self-estimated life expectancy was compared, where available, with observed survival, physician-estimated life expectancy and model-estimated life expectancy. Meta-analysis was not conducted due to the heterogeneity of the patient groups and study methodologies.

Results Among patients with HF, median self-estimated life expectancy was 40% longer than predicted by a validated model. Outpatients receiving haemodialysis were more optimistic about prognosis than their nephrologists and overestimated their chances of surviving 5 years. Patients with HF and COPD were approximately three times more likely to die in the next year than they predicted. Data available for patients with CKD were of insufficient quality to draw conclusions.

Conclusions Individuals with chronic disease may have unrealistically optimistic expectations of their prognosis. More research is needed to understand how perceived life expectancy affects behaviour. Meanwhile, clinicians should attempt to identify each patient's prognostic preferences and provide information in a way that they can understand and use to inform their decisions.

Trial registration number CRD42015020732.

  • chronic disease
  • prognosis
  • life expectancy
  • chronic kidney disease

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

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Footnotes

  • Twitter Follow Barnaby Hole @BarnyHole

  • Funding Mr Salem was supported by an INSPIRE award from the Academy of Medical Sciences supported by the Wellcome Trust. Open access publication costs were provided by the Wellcome Trust.

  • Contributors BH led on concept development, study design and manuscript preparation. BH and JS contributed equally to data collection and analysis. JS assisted in manuscript preparation.

  • Competing interests None declared.

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

  • Data sharing statement All data used in the preparation of this manuscript come from published studies. No additional data are available.