Cost of informal caregiving for patients with heart failure

doi:10.1016/j.ahj.2014.10.010

American Heart Journal

Volume 169, Issue 1, January 2015, Pages 142-148.e2

https://doi.org/10.1016/j.ahj.2014.10.010 Get rights and content

Background

Heart failure is a serious health condition that requires a significant amount of informal care. However, informal caregiving costs associated with heart failure are largely unknown.

Methods

We used a study sample of noninstitutionalized US respondents aged ≥50 years from the 2010 HRS (n = 19,762). Heart failure cases were defined by using self-reported information. The weekly informal caregiving hours were derived by a sequence of survey questions assessing (1) whether respondents had any difficulties in activities of daily living or instrumental activities of daily living, (2) whether they had caregivers because of reported difficulties, (3) the relationship between the patient and the caregiver, (4) whether caregivers were paid, and (5) how many hours per week each informal caregiver provided help. We used a 2-part econometric model to estimate the informal caregiving hours associated with heart failure. The first part was a logit model to estimate the likelihood of using informal caregiving, and the second was a generalized linear model to estimate the amount of informal caregiving hours used among those who used informal caregiving. Replacement approach was used to estimate informal caregiving cost.

Results

The 943 (3.9%) respondents who self-reported as ever being diagnosed with heart failure used about 1.6 more hours of informal caregiving per week than those who did not have heart failure (P < .001). Informal caregiving hours associated with heart failure were higher among non-Hispanic blacks (3.9 hours/week) than non-Hispanic whites (1.4 hours/week). The estimated annual informal caregiving cost attributable to heart failure was $3 billion in 2010.

Conclusion

The cost of informal caregiving was substantial and should be included in estimating the economic burden of heart failure. The results should help public health decision makers in understanding the economic burden of heart failure and in setting public health priorities.

Section snippets

Data

For our analysis, we used cross-sectional data from the 2010 HRS.⁸ HRS is a biennial longitudinal household survey for monitoring the health and well-being of people who are near or older than retirement age in the United States. It contains abundant sociodemographic information as well as self-reported health status and has often been used to estimate informal caregiving costs associated with chronic diseases including cancer, diabetes, stroke, and dementia.9, 10, 11, 12, 13 From the

Results

Among 19,762 respondents, 943 reported having ever been diagnosed with heart failure (Figure), for a weighted prevalence of 3.9%. Overall, those who ever had heart failure have different sociodemographic characteristics and health conditions compared with those who never had heart failure (Table I). The heart failure group was more likely to use both informal caregiving than the non–heart failure group. Overall, 33.0% of the respondents in the heart failure group used informal caregiving,

Discussion

Our estimates suggest a high economic burden due to informal caregiving for patients with heart failure. In 2010, ever having a diagnosis of heart failure was associated with 1.63 hours per week of informal caregiving. This finding was consistent with a previous study using 2000 HRS data for respondents who were ≥65 years old, which showed that those with heart failure used an additional 1.6 hours of informal caregiving per week compared with those who never had any heart problems.⁴ Heidenreich

Conclusion

In this study, we estimated that the annual informal caregiving cost for noninstitutionalized US patients with heart failure aged ≥50 years was $3.0 billion in 2010. This is 35% of 1 current estimate of mortality and morbidity costs for heart failure in the literature. This information should be taken into account, when considering the economic burden of heart failure and developing intervention strategies for heart failure prevention. We also found that non-Hispanic black patients used 2.8

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“We're all we got is each other”: Mixed-methods analysis of patient-caregiver dyads’ management of heart failure
2022, Heart and Lung
Citation Excerpt :
For instance, more than half of dyads encompass caregivers who report substantial contributions to self-care that patients perceive as insufficient, despite these same patients having lower hospitalization rates.11 Underestimation of informal caregivers’ contributions has significant implications regarding health systems’ ability to accurately budget for indirect costs,12 clinicians’ ability to effectively coordinate individuals’ care, and most importantly – dyads’ ability to adapt through an individual's illness trajectory.4 Most HF research to date has focused on promoting patients’ self-care in HF.
Individuals living with heart failure often require informal caregiving assistance for optimal self-care maintenance. The influence of caregiver burden and resilience on dyadic congruence is not well understood.
To compare how dyadic congruence is influenced by level of burden and resilience expressed by caregivers of patients with heart failure.
Mixed-methods analysis of individuals with heart failure and their caregivers, focusing on measures of caregiver burden (Zarit Burden Interview) and resilience (Brief Resilience Scale). Data were integrated using the Heart Failure Care Dyadic Typology.
Twelve dyads (n=24 participants) were classified as Type II (n=7) and Type III (n=5) dyads. Among Type II dyads, average caregiver burden was 19.43 (± 13.89) and resilience was 3.16 (± 1.04). For Type III dyads, average caregiver burden was 3.80 (± 4.27) and resilience 4.07 (± 1.36), respectively. Two key themes were derived: 1) caregivers’ tendency to take the lead, and 2) the usefulness of cognitive reframing. Data integration elucidated that theme 1 was more common among Type II dyads and those with higher burden, and theme 2 was more prevalent among Type III dyads and those with higher resilience.
Findings highlight important variances in how dyads collectively manage heart failure. Future inquiry should involve tailored intervention development to bolster informal caregivers’ quality of life and ability to better support patients throughout their heart failure trajectory.
The association between activities of daily living and long hours of care provided by informal caregivers using a nationally representative survey in Japan
2020, SSM - Population Health
Citation Excerpt :
In terms of the characteristics of PICs, unmarried daughters of care recipients (Brody, Litvin, Albert, & Hoffman, 1994) or unemployed (Coleman, 1993, p. 221) were associated with long hours of care by PIC. Other previous studies reported that the number of hours of caregiving differed among different ethnic groups (Joo, Fang, Losby, & Wang, 2015), and that PICs living in urban areas provided more hours of care than those living in rural ones (Coleman, 1993, p. 221; Wimo et al., 2017). The level of the ADLs of care recipients is an important factor associated with long hours of care provided by PICs.
Caregiver Burden and Cardiovascular Disease: Can We Afford to Keep the Health of Caregivers in Canada Invisible?
2019, Canadian Journal of Cardiology
Health coaching to improve self-care of informal caregivers of adults with chronic heart failure – iCare4Me: Study protocol for a randomized controlled trial
2019, Contemporary Clinical Trials
Persons with chronic heart failure are living longer. These patients typically live in the community and are cared for at home by informal caregivers. These caregivers are an understudied and stressed group.
We are conducting a two-arm, randomized controlled trial of 250 caregivers of persons with chronic heart failure to evaluate the efficacy of a health coaching intervention. A consecutive sample of participants is being enrolled from both clinic and hospital settings at a single institution affiliated with a large medical center in the northeastern US. Both the intervention and control groups receive tablets programmed to provide standardized health information. In addition, the intervention group receives 10 live coaching sessions delivered virtually by health coaches using the tablets. The intervention is evaluated at 6-months, with self-care as the primary outcome. Cost-effectiveness of the intervention is evaluated at 12-months. We are also enrolling heart failure patients (dyads) whenever possible to explore the effect of caregiver outcomes (self-care, stress, coping, health status) on heart failure patient outcomes (number of hospitalizations and days in the hospital) at 12-months.
We expect the proposed study to require 5 years for completion. If shown to be efficacious and cost-effective, our virtual health coaching intervention can easily be scaled to.
support millions of caregivers worldwide.
Registry based analysis of cost-of-illness study among stage C heart failure patients at Hospital Queen Elizabeth II, Sabah, Malaysia
2019, Health Policy and Technology
Citation Excerpt :
Firstly, the variation of cost across different studies can be viewed from the perspective of national income of the countries of the studies [39]. Lower income country such as Nigeria [4] generally spent less in heart failure than those high income countries [20,22,25,29,31,33,35,36,40] and upper middle-income countries [5,32,38]. Secondly, the cost estimates of heart failure cannot be generalized across different countries due to methodological differences.
Numerous cost-of-illness studies of heart failure (HF) have been published in developed countries, but such knowledge is lacking in Malaysia. To fill the gap, this study estimated the cost of HF in Hospital Queen Elizabeth II (HQEII).
This study adopted an activity-based costing approach from Ministry of Health's perspective. Data of types and quantities of healthcare components utilized during patient treatment at HQEII between 2013 and 2015 were extracted from the medical records. Censored costing using inverse probability weighted estimators was applied to estimate the mean annual cost of HF.
Ninety-two patients (85.9% male and 14.1% female) with a mean age of 59 (SD 3.5) years were included in this study. There were 451 outpatient clinic visits and 44 admissions, with a mean length of stay of 5.2 (SD 6.0) days. The mean and median annual cost of HF were US$ 5428, 95% CI (5311, 5545) and US$ 591, 95% CI (IQR 819) respectively in 2017. Inpatient cost accounted for 90.6% of the total cost and was mainly attributable to percutaneous coronary intervention (PCI) procedures and hospitalization.
PCI procedures and hospitalization were the cost drivers of HF. This finding indicates a possible opportunity for cost savings through efficient clinical management in the outpatient setting to prevent hospitalization.
Economic Burden of Informal Caregiving Associated With History of Stroke and Falls Among Older Adults in the U.S.
2017, American Journal of Preventive Medicine
Citation Excerpt :
Two-part models were applied because 89% of the study sample without stroke and 67% of the study sample with stroke did not utilize informal caregiving (Tables 1 and 2), and the distribution of informal caregiving hours in both groups was skewed. The model was adapted in several previous studies to estimate the economic burden of informal caregiving for chronic diseases, all of which used data with a skewed distribution.13,19,20 In the first part of the model, the authors used a logit model to estimate the associations of injurious and non-injurious falls with the likelihood of receiving informal caregiving.
Older adults are at high risk for stroke and falls, both of which require a large amount of informal caregiving. However, the economic burden of informal caregiving associated with stroke and fall history is not well known.
Using the 2010 Health and Retirement Study, data on non-institutionalized adults aged ≥65 years (N=10,129) in 2015–2017 were analyzed. Two-part models were used to estimate informal caregiving hours. Based on estimates from the models using a replacement cost approach, the authors derived informal caregiving hours and costs associated with falls in the past 2 years for stroke and non-stroke persons.
Both the prevalence of falls overall and of falls with injuries were higher among people with stroke than those without (49.5% vs 35.1% for falls and 16.0% vs 10.3% for injurious falls, p<0.01). Stroke survivors needed more informal caregiving hours than their non-stroke counterparts, and the number of informal caregiving hours was positively associated with non-injurious falls and even more so with injurious falls. The national burden of informal caregiving (2015 U.S. dollars) associated with injurious falls amounted to $2.9 billion (95% CI=$1.1 billion, $4.7 billion) for stroke survivors (about 0.5 million people), and $6.5 billion (95% CI=$4.3 billion, $8.7 billion) for those who never had a stroke (about 3.6 million people).
In U.S. older adults, informal caregiving hours and costs associated with falls are substantial, especially for stroke survivors. Preventing falls and fall-related injuries, especially among stroke survivors, therefore has potential for reducing the burden of informal caregiving.

View all citing articles on Scopus

: The findings and conclusions of this article are those of the authors and do not necessarily represent the official position of the US Centers for Disease Control and Prevention (CDC).

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Clinical InvestigationOutcomes, Health Policy and Managed CareCost of informal caregiving for patients with heart failure

Background

Methods

Results

Conclusion

Section snippets

Data

Results

Discussion

Conclusion

J Am Coll Cardiol

J Health Econ

Am Heart J

Soc Sci Med

Forecasting the impact of heart failure in the United States: a policy statement from the American Heart Association

Circ Heart Fail

Heart disease and stroke statistics—2014 update: a report from the American Heart Association

Circulation

Degree of disability and patterns of caregiving among older Americans with congestive heart failure

J Gen Intern Med

National and regional trends in heart failure hospitalization and mortality rates for Medicare beneficiaries, 1998-2008

JAMA

Costs of heart failure-related hospitalizations in patients aged 18 to 64 years

Am J Manag Care

Economic burden of heart failure in the elderly

PharmacoEconomics

HRS 2010 fat (final v3.0) and core (final v4.0) public use dataset

Produced and distributed by the University of Michigan with funding from the National Institute on Aging (grant number NIA U01AG009740)

Estimating the cost of informal caregiving for elderly patients with cancer

J Clin Oncol

Informal caregiving for diabetes and diabetic complications among elderly Americans

J Gerontol B Psychol Sci Soc Sci

Clinical Investigation
Outcomes, Health Policy and Managed Care
Cost of informal caregiving for patients with heart failure