Exploring the prevalence, impact and experience of cardiac cachexia in patients with advanced heart failure and their caregivers: A sequential phased study

Matthew A Carson, Joanne Reid, Loreena Hill, Lana Dixon, Patrick Donnelly, Paul F Slater, Alyson J Hill, Susan Piper, theresa McDonagh, Donna Fitzsimons

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BACKGROUND: Cardiac Cachexia is a wasting syndrome that has a significant impact on patient mortality and quality of life world-wide, although it is poorly understood in clinical practice.

AIM: Identify the prevalence of cardiac cachexia in patients with advanced New York Heart Association (NYHA) functional class and explore its impact on patients and caregivers.

DESIGN: An exploratory cross-sectional study. The sequential approach had two phases, with phase 1 including 200 patients with NYHA III-IV heart failure assessed for characteristics of cardiac cachexia. Phase 2 focussed on semi-structured interviews with eight cachectic patients and five caregivers to ascertain the impact of the syndrome.

SETTING/PARTICIPANTS: Two healthcare trusts within the United Kingdom.

RESULTS: Cardiac Cachexia was identified in 30 out of 200 participants, giving a prevalence rate of 15%. People with cachexia had a significantly reduced average weight and anthropometric measures ( p  < 0.05). Furthermore, individuals with cachexia experienced significantly more fatigue, had greater issues with diet and appetite, reduced physical wellbeing and overall reduced quality of life. C-reactive protein was significantly increased, whilst albumin and red blood cell count were significantly decreased in the cachectic group ( p  < 0.05). From qualitative data, four key themes were identified: (1) 'Changed relationship with food and eating', (2) 'Not me in the mirror', (3) 'Lack of understanding regarding cachexia' and (4) 'Uncertainty regarding the future'.

CONCLUSIONS: Cardiac cachexia has a debilitating effect on patients and caregivers. Future work should focus on establishing a specific definition and clinical pathway to enhance patient and caregiver support.

Original languageEnglish
Pages (from-to)1118-1128
Number of pages11
JournalPalliative Medicine
Issue number7
Early online date21 Jun 2022
Publication statusPublished (in print/issue) - 1 Jul 2022

Bibliographical note

Funding Information:
DF, JR and LH applied for funding. MAC, DF, JR, LH, LD, PD, PS and AH participated in the planning of the study. MAC, DF, JR and LH were responsible for the writing of the study protocol. PS was the responsible statistician. MAC completed data collection, analysis and drafted the manuscript. DF, JR and LH aided in data analysis. TAMcD and SEP provided feedback during the drafting of the manuscript. All authors read and approved the final manuscript.

Funding Information:
The authors would like to thank all heart failure nurses and cardiologists within the Belfast and South Eastern Trusts, for assistance during patient recruitment. We would also like to thank all patients and family members who participated in this work. The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: this work was funded by Northern Ireland Chest Heart and Stroke (grant reference: NICHS 2018_08).

Publisher Copyright:
© The Author(s) 2022.


  • Cachexia
  • prevalence
  • heart failure
  • quantitative
  • Caregiver
  • qualitative
  • caregiver
  • Original Articles
  • sequential phased
  • Caregivers
  • Heart Failure - complications
  • Cachexia - epidemiology - etiology
  • Prevalence
  • Cross-Sectional Studies
  • Humans
  • Quality of Life


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