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What is the patient experience in advanced liver disease? A scoping review of the literature
  1. Barbara Kimbell and
  2. Scott A Murray
  1. Primary Palliative Care Research Group, Centre for Population Health Sciences, University of Edinburgh, Edinburgh, UK
  1. Correspondence to Barbara Kimbell, Primary Palliative Care Research Group, Centre for Population Health Sciences, University of Edinburgh, Medical School, Teviot Place, Doorway 3, Edinburgh EH8 9AG, UK; b.kimbell{at}sms.ed.ac.uk

Abstract

Background There has been a dramatic increase in liver disease over recent decades, with morbidity and mortality rates predicted to rise significantly. In order to effectively support this growing patient population we need to understand the experiences, key issues and priorities of people living and dying with advanced liver disease.

Aims To establish what is currently known about the patient experience of advanced liver disease.

Methods Scoping literature review. We searched MedLine, Web of Science, CINAHL and PsychINFO databases. Eligibility criteria: original research and review papers written in English since 1990 relating to the adult patient experience of advanced liver disease. Papers focusing on treatment development, acute liver failure or post liver transplantation were excluded.

Results 240 abstracts were identified and 121 articles reviewed in full. Patients with advanced liver disease experience many physical and psychosocial challenges, often of a greater severity than those reported in other advanced conditions. They are affected by gastrointestinal problems and fatigue, with both linked to higher levels of depression. Socio-demographic variations in the patient experience occur. Only two studies explored the holistic patient experience.

Conclusions Our knowledge of the patient experience in advanced liver disease is mainly from quality of life instruments and quantitative research. There are methodological limitations in the existing research such that the holistic patient experience is not well described. Qualitative longitudinal research has great potential for contributing to our understanding of the complex needs and experiences of patients living with advanced liver disease.

  • Liver Diseases
  • liver failure
  • patient experience
  • Quality of life
  • palliative care
  • Terminal care
  • Received 17 December 2012.
  • Revision received 7 May 2013.
  • Accepted 1 June 2013.

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  • Received 17 December 2012.
  • Revision received 7 May 2013.
  • Accepted 1 June 2013.
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