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Profound Impact of Heart Failure Seen in Patients, Caregivers Alike


Responses from a study of in-person focus groups show that not only do patients report adverse effects on quality of life, physical well-being, and mental health but that their caregivers do as well.

Responses from a observational, cross-sectional, qualitative study of in-person focus groups in the United States show that not only do patients report adverse effects on quality of life, physical well-being, and mental health in the aftermath of a heart failure (HF) diagnosis, but that their caregivers do as well, according to PLoS One.

The most common negative effect among the 19 focus groups evaluated between April and September 2018 was among social and family interactions, with these dropping by 67.2% and 50.0% among patients and caregivers, respectively.

“Heart failure is rising in prevalence but relatively little is known about the experiences and journey of patients and their caregivers,” the authors note. “Past research has characterized the burden of HF on patients and caregivers, it is not without limitations, which motivated the current research.”

For their study, they defined a caregiver as “anyone who cares—unpaid—for a friend or a family member living with HF.”

Most of the 63 patients and 25 caregivers evaluated were female (52.0% for both groups), with the mean (SD) age being 59.3 (8) years among patients and 55.5 (11.2) years among caregivers. Most patients were non-Hispanic (92.1%), White (57.1%), or African American (41.0%), and most caregivers non-Hispanic (92.0%) and White (76.0%) and lived with the patient (56.0%).

All participants were recruited from Beverly Hills, California; Skokie, Illinois; Boston, Massachusetts; and Philadelphia, Pennsylvania via market-research vendors.

Beyond the drops seen in social and family interactions, analyses revealed the following:

  • Among patients, dietary changes (64.1%) and difficulty walking and climbing stairs (56.3%) were the top negative outcomes
  • Among caregivers, feelings of stress, worry, and fear (46.2%) and having to monitor their “patience” level (42.3%) were the top negative outcomes
  • Mean duration since HF diagnosis was 8.9 (8.5) years
  • Patients’ top self-reported comorbid conditions were hypertension (54.0%), arthritis (44.4%), myocardial infarction/heart attack (22.2%), anxiety (19.0%), and depression and diabetes (15.9% each)
  • Caregivers also reported high rates of frustration (34.6%), being tired or exhausted (30.8%), depression (26.9%), and feeling unappreciated (24.0%)

Mental health issues also predominated among patients, with depression and sadness, fear of dying, anxiety, and difficulty concentrating listed as the top 4 with rates of 43.8%, 32.8%, 32.8%, and 15.7%, respectively. In addition, New York Heart Association class II and III disease were the predominant types of HF (55.6% and 30.2%, respectively), with patients’ most common HF symptoms being dyspnea (81.3%), fatigue/tiredness (76.6%), ankle/leg lymphedema (57.8%), and trouble sleeping (50.0%).

Caregivers also reported using vacation time for caregiving, transitioning to part-time status, losing income from needing to take time off, and retiring early to provide care.

Because physical, mental, and social well-being are affected in patients with HF and their caregivers alike, they must be understood and addressed in both groups in order to improve outcomes, or “symptom ramifications,” noted the authors. They also highlighted that their findings echo previous studies on physical, mental, and social health following a HF diagnosis and how many of these needs continue to remain unmet.

“Living with HF is a shared—and often demanding—journey between patients and their caregivers,” the authors noted. “As shown by this and other research, the magnitude of patient and caregiver unmet need is palpable. More systematic research is needed to better characterize and understand unmet need at the patient, caregiver, and societal level.”

Interventions should also address diverse cultural needs and individual preferences, while measures of indirect costs should incorporate the daily functioning and well-being deficits that disrupt daily life.

“We advocate for making HF a much higher priority—perhaps akin to the oncology patient-centered medical homes,” they concluded, “with quality metrics and policy changes that can help ameliorate the daily suffering and broad societal impact that is currently vastly underestimated and undertreated."


McHorney CA, Mansukhani SG, Anatchkova MA, et al. The impact of heart failure on patients and caregivers: a qualitative study. PLoS One. Published online March 11, 2021. doi:10.1371/journal.pone.0248240

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