Tools to measure quality of life and carer burden in informal carers of heart failure patients: A narrative review

School of Nursing, Midwifery and Physiotherapy, University of Nottingham, Nottingham, UK.
Palliative Medicine (Impact Factor: 2.86). 02/2013; 27(7). DOI: 10.1177/0269216313477179
Source: PubMed


Background: Heart failure is a complex cardiac syndrome prevalent in an older population. Caring for heart failure patients through the disease trajectory presents physical and emotional challenges for informal carers. Carers have to deal with clinically unstable patients, the responsibility of managing and titrating medication according to symptoms and frequent admissions to acute care. These challenges compound the demands on caregivers’ physical and psychosocial well-being. Alongside the negative impact of being a carer, positive aspects have also been demonstrated; carers describe feelings of shared responsibility of caring with professional carers and the reward of supporting a loved one, which creates a new role in their relationship.

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    • "In line with findings from other studies [14, 16, 20, 23], 88 % of key relatives reported that they had gotten something positive out of the situation. In particular, 72 % of key relatives mentioned having changed their perception of the meaning of life’s values, while 18 % mentioned an increased sense of strength and courage against adversities. "
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    ABSTRACT: Purpose: Self-care is a cornerstone for the successful management of heart failure (HF). However, it remains to be elucidated whether self-care predicts subsequent clinical outcomes. The purpose of this study was to examine effects of HF-related self-care on prognosis in Japanese patients with HF. Methods: A total of 283 HF outpatients (mean age 64±14, 70% male, 52% HF-REF) completed a self-administered questionnaire. We examined whether patient's adherence to three self-care behaviors of which prognostic benefits have been established were sufficient or insufficient: (1) medical therapy, (2) regular exercise, and (3) contacting health care providers if their feet/legs become more swollen than usual. Subsequently, we developed a risk score by adding the number of insufficient ones among the above 3 behaviors (range, 0-3), and then classified patients into two groups: (a) good self-care with the risk score of 0 or 1, and (b) poor self-care with the risk score of 2 or 3. Results: Insufficient self-care to medication, regular exercise, and health seeking behavior were observed in 7%, 62%, and 70%, respectively. In total 47% of patients (n=134) were classified into the poor self-care group. At baseline, there were no significant differences except for age and employment in patient's characteristics between the poor and good self-care groups (age 62 vs. 66 years; employed 53 vs. 35%). After a median follow-up of 2 years, the composite endpoint of HF hospitalization and/or cardiac death occurred more frequently in the poor self-care group (24% vs. 12%, p=0.009 by log-rank test). Poor self-care was associated with a 2.2-fold increased risk of the cardiac events in Cox regression analysis adjusted for age, sex, and B-type natriuretic peptide levels [hazard ratio (HR) =2.17, 95% confidence interval (CI) =1.20 to 3.92, p=0.010). Poor self-care also predicted cardiac death (7.6% vs. 2.7%, p=0.029), not but all-cause death (9.3% vs. 6.6%). An independent risk factor influencing the poor self-care was being employed in multivariate logistic regression analysis (odds ratio=1.73, 95% CI=1.03-2.91, p=0.040). Conclusions: Self-care is an independent predictor for cardiac events in Japanese patients with HF. Our findings suggest that enhancing patient's self-care practice especially in medical therapy, regular exercise, and health seeking behavior if HF is getting worse leads to improve their clinical outcomes.
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