Adult patients living with heart failure: Experiences and management of fatigue in everyday life - a systematic review protocol of qualitative evidence

Abstract

Review questions/objectives The objective of this systematic review is to synthesize the best available evidence related to the lived experiences and management of fatigue in everyday life in adult patients with stable heart failure (HF). Specific questions on their lived experiences include: How do patients with HF describe their experiences of fatigue? How do patients with HF perceive the impact of fatigue in everyday life? How do patients with HF manage fatigue and its consequences in everyday life? Background Heart failure is a major and growing global health problem. Heart failure occurs when the cardiac contractile function is compromised to an extent that leads to inadequate perfusion of tissues. The most common cause of heart failure is ischemic heart disease (70%). Other causes are hypertension, valvular heart disease, cardiomyopathies, atrial fibrillation, and congenital heart disease 1. Symptoms typical of heart failure are breathlessness, fatigue, fluid retention such as pulmonary congestion or ankle swelling 1. In developed countries most patients with heart failure are elderly people, with mean age of 75 years and the prevalence of heart failure in 70-80 year-old-people is between 10 and 20% 1. Overall, 50% of patients die within four years after they are diagnosed 1. The number of heart failure patients will increase in future due to improved treatment as well as primary and secondary prevention of cardiovascular diseases and improved life expectancy 1. Heart failure is a chronic condition2. Treatment targets progression of the disease, improvement of prognosis and reduction/alleviation of symptoms. Important aspects in heart failure management are medication, self-care and lifestyle modifications 1. People living with heart failure may experience reduced independence and ability to undertake certain activities of daily living, as well as psychosocial and economic incapacity 2, 3. Patients with heart failure experience several symptoms. Mental and psychical fatigue are common symptoms reported by patients with heart failure 1, 3-6. Fatigue can be related to physical exertion, but many patients experience fatigue, which is unrelated to physical exertion. This kind of fatigue can be experienced as an uncomfortable, unusual, abnormal or overwhelming condition involving the entire body 7, 8 Between 53 and 100% of patients with heart failure experience fatigue3, 9-12 and 50-83% report severe to very severe fatigue 11-14. This broad range of reported fatigue levels can be explained by different populations, study design and measurement instruments. The fatigue score are higher for patients with heart failure than healthy controls 15, 16 and patients with heart failure report the same severity of fatigue as patients with cancer 16 and stroke 17. Fatigue in patients with heart failure correlates with shortness of breath 6, 14, 18, 19, low hemoglobin level 12, 14, 16, depression 6, 13, 20-22, poor quality of life 11, 22-24, physical 10, 16, 21 and social limitations 8, 21, 25, deterioration of heart failure 4, hospitalization and mortality 26. Studies show that there is no significant correlation between fatigue and ejection fraction11, 13 (i.e. the ratio of the volume of blood the heart empties during systole to the volume of blood in the heart at the end of diastole expressed as a percentage) or age 6, 9, 11, 13, 16. However, higher age was associated with reduced motivation in one study 10, 12, similar result was also found in populations with and without chronic illness 27. Therefore, motivation decrease with age may be explained as a natural part of aging and not by heart failure. Fatigue was correlated with gender in a single study population 15, 28 but not in others 6, 11, 13, 16, 29 and similar inconsistent results were seen between fatigue and symptom severity (New York Heart Association functional classification (NYHA)) 11-13, 16, 19. Fatigue is a multifactorial non-specific symptom with the underlying mechanisms in heart failure having not been clearly identified. An inability to increase cardiac output during exercise and degenerative changes in vascular and skeletal muscles appear to play an important role 30, 31. Some heart failure patients relate their fatigue to their age 29 rather than their disease 32. Patients who relate the intensity of their fatigue to their age, regardless of their age often score low for quality of life (QOL) 11. Fatigue negatively impacts on patients' everyday life, prognosis and QOL therefore it is important that patients can manage, monitor and respond to changes in their fatigue status. Patients with heart failure may need or seek advice about self-management strategies to cope with their fatigue however nursing interventions to alleviate or reduce fatigue in patients with heart failure do not seem to receive the same attention in clinical practice as symptoms such as dyspnoea and oedema. Fatigue is a non-specific, invisible and subjective experience which is difficult to describe and there is no specific cure or effective interventions available, heart disease-related fatigue may be difficult to manage for both the health professional and/or patient 33. Patients infrequently report fatigue unless they are asked even though fatigue and weakness are the most distressing symptoms that influence on (cancer-) patients' self-care abilities 7. To develop more coherent and effective interventions to support self-care among heart failure patients experiencing fatigue, qualitative studies have been performed over the past decade to explore the lived experience of fatigue in patients with heart failure. A search in the following databases; the Cochrane Library, the Joanna Briggs Institute (JBI) Library, Medline and CINAHL revealed that this specific topic has not previously been addressed in a systematic review nor is one in progress. Synthesizing such knowledge into a more organized and systematic manner could promote understanding and management of fatigue in patients with heart failure and result in improved care planning and delivery. Therefore, the purpose of this systematic review is to determine what is currently known about the experiences of living with and management of fatigue by adult patients with heart failure. Definitions of terms Fatigue Fatigue is defined as a subjective, unpleasant symptom, which incorporates total body feelings ranging from tiredness to exhaustion creating an unrelenting overall condition, which interferes with an individuals' ability to function at their normal capacity 34 Heart Failure In this review, HF is defined as a syndrome in which the patients should have the following features: shortness of breath, fatigue, signs of fluid retention and objective evidence of an abnormality of the structure or function of the heart at rest. A clinical response to treatment directed at HF alone is not sufficient for the diagnosis, but is helpful when the diagnosis remains unclear after appropriate diagnostic investigations 1