Living with heart failure: quality of life, particularly sexual life, is impaired by emotional burden as reported by patients

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Abstract Background Symptoms of heart failure (HF) include shortness of breath and limited exercise capacity as a result of fluid retention and circulatory disorders. Life expectancy of HF patients has improved, mainly driven by current treatment modalities. The burden of HF in terms of quality of life (QoL) and emotional well-being is frequently neglected and is less well described than typical HF symptoms. Purpose The aim of this study is to better understand the impact of HF on patients' QoL and emotional well-being from the patients' perspective. Methods Data on disease perception and physical as well as emotional burden was collected using an online survey from Nov to Dec 21 from patients with HF diagnosis (Nfemale=830; Nmale=927). Results Overall, the majority of HF patients considered being capable of fulfilling everyday routines as highly important. In detail, 87% of HF patients rated taking care of themselves, 82% running the household independently, 83% mobility outside the house and 74% social life with highest importance*. Impairments in the same QoL determining aspects from above showed a bimodal distribution of HF patients meaning that they were either highly affected or not affected at all. Male and female HF patients rated QoL aspects in terms of importance and impairment equally, except sexual life importance and sexual impairments, which were ranked higher by men (56% vs. 42%*, 39% vs. 32%§, respectively). Being asked about their biggest concern regarding HF via an open-ended question, death was the most commonly reported term. However, 20% indicated social and emotional worries as their first concern. Indeed, HF patients were frequently emotionally affected and almost every second HF patient stated considerable restrictions of their daily obligations and every third of their social life due to emotional problems. Patient-reported emotions were being worried (53%#), listless/without energy (47%#), fatigue (45%#) and/or afraid (42%#). Interestingly, the fraction of HF patients being unsatisfied with their sexual life was larger when patients indicated feeling emotionally affected (worried, listless, fatigue, afraid). On the other hand, HF patients indicating no negative emotions were more satisfied with their sexual life highlighting the importance of sexual health contributing to QoL. Conclusion(s) The emotional burden experienced by HF patients is as high as their physical impairments culminating in considerable restrictions of their daily routines due to emotional problems. Additionally, emotional well-being is strongly linked with sexual satisfaction. *On a scale from 1 = “not important” to 10 = “very important” rated ≥7. §On a scale from 1 = “not affected” to 10 = “no activity possible” rated ≥7. #On a scale of 1 = “never” to 10 = “very often” rated ≥7. Funding Acknowledgement Type of funding sources: Private company. Main funding source(s): Novartis Pharma GmbH