The impact of heart failure on patients and caregivers: A qualitative study

Abstract

Background Heart failure is rising in prevalence but relatively little is known about the experiences and journey of patients and their caregivers. The goal of this paper is to present the symptom and symptom impact experiences of patients with heart failure and their caregivers. Methods This was a United States-based study wherein in-person focus groups were conducted. Groups were audio recorded, transcribed and a content-analysis approach was used to analyze the data. Results Ninety participants (64 patients and 26 caregivers) were included in the study. Most patients were female (52.0%) with mean age 59.3 ± 8 years; 55.6% were New York Heart Association Class II. The most commonly reported symptoms were shortness of breath (81.3%), fatigue/tiredness (76.6%), swelling of legs and ankles (57.8%), and trouble sleeping (50.0%). Patients reported reductions in social/family interactions (67.2%), dietary changes (64.1%), and difficulty walking and climbing stairs (56.3%) as the most common adverse disease impacts. Mental-health sequelae were noted as depression and sadness (43.8%), fear of dying (32.8%), and anxiety (32.8%). Caregivers (mean age 55.5 ± 11.2 years and 52.0% female) discussed 33 daily heart failure impacts, with the top three being reductions in social/family interactions (50.0%); being stressed, worried, and fearful (46.2%); and having to monitor their “patience” level (42.3%). Conclusions There are serious unmet needs in HF for both patients and caregivers. More research is needed to better characterize these needs and the impacts of HF along with the development and evaluation of disease management toolkits that can support patients and their caregivers.

Improved 30-Day Heart Failure Readmissions Following Implementation of an Advanced Cardiovascular Education (ACE) Academy

“…Heart failure is a complex, chronic syndrome associated with significant symptom burden, functional impairment, and diminished quality of life for patients and their families. 19 Recognized as a global epidemic in 1997, 20 an estimated 64.3 million people are now living with heart failure worldwide. 21 Since heart failure incidence and prevalence increase sharply with age, the global burden of heart failure is expected to rise dramatically in the next few decades due to an aging population and improvements in treatment that prolong survival.…”

“…Heart failure is a complex, chronic syndrome associated with significant symptom burden, functional impairment, and diminished quality of life for patients and their families 19. Recognized as a global epidemic in 1997,20 an estimated 64.3 million people are now living with heart failure worldwide 21.…”

Evaluation of Online Written Medication Educational Resources for People Living With Heart Failure

“…and are crucial to include in patient education to engage patients in their care and medication management. 3 …”

“… 2 The variety and complexity of HF treatment options may result in patients and their caregivers feeling overwhelmed, which can negatively impact patient outcomes. 3 , 4 One intervention to overcome this issue is patient education about HF, their disease condition, and available treatment options. 4 , 5 Provision of written patient educational resources may help improve patient understanding of their condition and treatment options.…”

The adaptation to Turkish of the caregiver contributions to selfcare of heart failure index: a validity and reliability study

“…Despite continuous developments in science and technology in the field of healthcare, heart failure is one of the most important causes of morbidity and high mortality with an increasing prevalence and incidence worldwide. According to the 2015 data of the American Heart Association, there were approximately 6.2 million heart failure (HF) patients aged >20 years in the USA, and when 870,00 new diagnoses per year are added, it is estimated that the rate of diagnosed cases will increase by 46% by the year 2030 (1,2). According to the HAPPY study, HF prevalence in Turkey is 6.9% and there are 2,000,424 adult HF patients (3).…”