Title: prevalence & experience of cardiac cachexia
Funder: Northern Ireland Chest, Heart and Stroke

Abstract: Background: Cardiac cachexia, defined as severe weight loss and muscle wasting is common in advanced heart failure. Patients have poor quality of life and increased risk of premature death, but are largely unidentified and untreated in clinical practice. Aim: Explore the prevalence, experience and clinical implications of cardiac cachexia for patients with heart failure. Objectives: Evaluate the prevalence and clinical implications of cardiac cachexia in patients with NYHA Class III – IV heart failure in Northern Ireland. Explore the qualitative experience of cardiac cachexia from patients’ and caregivers’ perspectives. Consult with Key Stakeholders and define practice implications of study findings Methods: A mixed methods cross-sectional study. Phase 1: Assess a purposive sample of 357 patients with advanced heart failure for signs of cachexia (Weight, muscle mass and strength and selected biomarkers)and complete three validated questionnaires; FACIT- fatigue, EuroQol 5 - quality of life and FAACT- Functional Assessment. Phase 2: Semi-structured qualitative interviews with those patients (n=12) meeting criteria for cardiac cachexia, and their caregivers (n=12) to explore experience of cachexia and impact on daily life. Interviews will be digitally recorded and transcribed verbatim, prior to qualitative content analysis. Phase 3: A Workshop with Key Stakeholders (patients, caregivers, healthcare professionals and commissioners) will discuss findings identify practice implications that may be tested in further research. Anticipated value: This study will provide a unique insight into the prevalence and experience of cardiac cachexia and enable discussion of innovative strategies that with further research may deliver improvements in clinical practice, policy and education.

Lay abstract: WHAT IS THIS STUDY ABOUT? This research study aims to investigate the wasting disorder known as cachexia. Cardiac cachexia is common for people who have advanced heart failure. Patients have poor quality of life and increased risk of premature death. Evidence suggests cachexia is present in many patients with advanced heart failure. Treating patients with cardiac cachexia is challenging for a number reasons. These reasons include the fact that it is difficult to distinguish between cardiac cachexia and symptoms that are signs of other illnesses, and the fact that health care professionals lack guidance on how to identify and treat it within clinical practice. HOW WILL THE RESEARCHERS DO THIS? This research team will measure the prevalence of cardiac cachexia for patients with heart failure, and what impact these numbers have on the services who treat them. They will examine 357 patients with advanced heart failure for signs of cachexia. It is important to understand how patients who have the condition and their carers feel about it, and its possible effect on daily life. So, once Professor Donna Fitzsimons and her team have measured the extent of cardiac cachexia, they will complete patient and carer interviews that explore their experiences. They hope to interview 12 patients and 12 carers. WHAT’S THE LIKELY IMPACT? This study is worthwhile because living with a condition no one acknowledges is frustrating for patients and their families. We need to add to the knowledge of this condition so we can begin to develop interventions that seek to improve patients’ quality of life at the end of life.

Research activity codes: 2.1 BIOLOGICAL AND ENDOGENOUS FACTORS;7.1 INDIVIDUAL CARE NEEDS
Health categories: CARDIOVASCULAR