Heart-Failure Patient Outcomes Improve With Worsening Family-Caregiver Strain

September 21, 2018

NASHVILLE, Tennessee — The risk for hospitalization or death declined for patients with heart failure (HF) as the burden perceived by their at-home caregiver increased, suggests a secondary analysis of a small trial.

In the study of 92 HF patients in the community and their caregivers, usually a spouse or partner, self-perceived caregiver burden in the highest vs lowest tertile was associated with a more-than 90% drop in the patient's risk for death, outpatient treatment for worsening HF, or HF hospitalization (P = .04).

"If the caregiver reported more burden, the patient actually had fewer events over time," Julie T. Bidwell, PhD, RN, University of California, Davis, told theheart.org | Medscape Cardiology.

The finding, which points to a "potential trade-off between patient and caregiver clinical outcomes," was significantly independent of whether the patient had been previously hospitalized, itself a well-recognized predictor of poor outcomes, she noted.

In questionnaires for the family caregivers, questions about "burden," given the word's negative connotations, were instead framed as questions about the level of strain they felt from taking care of the patient. "Burden," Bidwell said, "is not how caregivers characterize their patients."

But those who report strain "are more likely to have morbidity and increased mortality over time, so the more we understand what that is, the better we can get a handle on reducing it."

The analysis based on 92 pairs of patients and caregivers in and around Atlanta, which Bidwell presented here at the Heart Failure Society of America 22nd Annual Scientific Meeting, replicated the results from a similar cohort in Italy that she and her colleagues reported last year.

The patients' mean LVEF was 27.2%, with a fourth of them in NYHA functional class 3 and the rest in class 2. Half had been diagnosed with heart failure more than 5 years earlier, and 40% had been admitted to the hospital for HF in the previous 4 months.

Characteristics of 92 HF Patients and 92 At-Home Caregivers
Parameter Patient Caregiver
Age, mean (y) 56.3 53.4
Female (%) 38 82
African American (%) 63 65
Charlson Comorbidity Index score 3.2 1.0
Depression score (Beck Depression Inventory II) 12.4 7.6


Over 8 months, 43.5% of the patients experienced a prespecified clinical event, including an emergency provider visit for worsening HF in 6.5%, an HF hospitalization in 30.4%, and death from any cause in 6.5%.

An HF hospitalization in the previous 4 months was a significant, independent predictor of a clinical event, at an HR of 4.58 (95% CI, 1.6 - 13.4; = .01).

Caregiver strain had been measured at baseline using the 15-item Bakas Caregiving Outcomes Survey (BCOS) instrument, in which higher scores correspond to better outcomes related to caregiving.

Caregivers scoring in the lowest-strain tertile had a mean score of 82.9; scores for the middle and highest tertiles for strain were 61.1 and 52.1, respectively.

Adjusted Odds Ratio (OR) for Patient Clinical Events Over 8 Months by Level of Caregiver Strain*
Caregiver Strain Tertile OR (95% CI) vs Lowest Tertile for Strain P Value
Middle 0.21 (0.02–2.22) .19
High 0.08 (0.01–0.85) .04
*Controlled for caregiver health literacy, caregiver depression, and patient hospitalization for HF in the previous 4 months.

The inverse relationship between caregiver strain and patient clinical outcomes was "substantial and significant," but also "relatively imprecise" given the wide confidence intervals. That suggests a lot of heterogeneity for outcomes in patient–caregiver pairs with highly strained caregivers, Bidwell said.

Although the analysis doesn't show why the relationship is an inverse one, it may have to do with changing degrees of caregiver strain over time, she said. "We know that the trajectory of caregiving is very different at different stages of disease and different stages of life."

Caregivers who are acutely strained "are doing a lot for the patient. They are taking over medications and other types of management. But there may be some difference with caregivers who are chronically strained, who are chronically under stress, in that their ability to engage may be different," she said.

"So I think to get to the bottom of this effect, we'll have to capture the trajectory of heart failure for more than 8 months, and we'll have to measure strain for more than 8 months."

Bidwell reports she has no conflicts of interest.

Heart Failure Society of America 2018 Scientific Meeting: Abstract 251. Family Caregiver Strain and Likelihood of Heart Failure Patient Clinical Events: A Replication Study. Presented September 15, 2018.

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