Purpose of review: To summarize the latest research on the risks and consequences of the burden that may be imposed on informal carers of persons living and dying with advanced heart failure.Recent findings: A systematic search in PubMed over the period 2013–2014 ultimately revealed 24 original articles included in this review. From this research update it can be concluded that the body of knowledge increased with more studies focusing on caregivers of patients with advanced heart failure.Summary: Caregivers are important partners in care and their lives are seriously affected by the condition of advanced heart failure. Studies on the longitudinal effects of the caregiving role on caregiver's quality of life and on caregiver contributions to patient outcomes is still scarce. Focus of current research is moving towards relationship aspects. Dyadic-care typologies and the concept of incongruence within dyads in terms of conflicting perspectives on how to manage the heart failure are new and important concepts presented in studies presented in this review. Heart failure patients and their caregivers still lack sufficient palliative care and communication on prognosis and end-of-life care. More research is needed to determine the optimal time to start palliative interventions to support caregivers of patients with advanced heart failure.
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BACKGROUND: Patients' self-care behaviour is still suboptimal in many heart failure (HF) patients and underlying mechanisms on how to improve self-care need to be studied.AIMS: (1) To describe the trajectory of patients' self-care behaviour over 1 year, (2) to clarify the relationship between the trajectory of self-care and clinical outcomes, and (3) to identify factors related to changes in self-care behaviour.METHODS: In this secondary analysis of the COACH-2 study, 167 HF patients (mean age 73 years) were included. Self-care behaviour was assessed at baseline and after 12 months using the European Heart Failure Self-care Behaviour scale. The threshold score of ⩾70 was used to define good self-care behaviour.RESULTS: Of all patients, 21% had persistent poor self-care behaviour, and 27% decreased from good to poor. Self-care improved from poor to good in 10%; 41% had a good self-care during both measurements. Patients who improved self-care had significantly higher perceived control than those with persistently good self-care at baseline. Patients who decreased their self-care had more all-cause hospitalisations (35%) and cardiovascular hospitalisations (26%) than patients with persistently good self-care (2.9%, p < 0.05). The prevalence of depression increased at 12 months in both patients having persistent poor self-care (0% to 21%) and decreasing self-care (4.4% to 22%, both p < 0.05).CONCLUSION: Perceived control is a positive factor to improve self-care, and a decrease in self-care is related to worse outcomes. Interventions to reduce psychological distress combined with self-care support could have a beneficial impact on patients decreasing or persistently poor self-care behaviour.
The Heart Failure Caregiver Questionnaire (HF-CQ) was developed to assess subjective outcomes of heart failure caregivers. The HF-CQ comprises 21 questions on three domains, namely physical, emotional/psychological and lifestyle. The objective of this study was to evaluate the psychometric properties of the HF-CQ.
