Burden of heart failure on caregivers in China: results from a cross-sectional survey

Abstract

PurposeFamily and friends play a pivotal role in caring for patients with heart failure (HF); however, evidence of the impact of caregiving is limited. The objectives of this study were to describe the burden of caregiving on informal caregivers of patients with chronic HF in China.Materials and methodsA cross-sectional survey of cardiologists, their patients with HF, and those patients’ caregivers was conducted. Patient record forms were completed by 150 cardiologists for 10 consecutive patients. Caregivers of these patients were invited to complete a questionnaire.ResultsOverall, 458 caregivers completed a questionnaire (mean ± standard deviation age 60.1±10.6 years; 60% female; 77% spouses; 74% retired). Caregivers spent a mean of 24.5 (16.9) hours caregiving per week, and a third reported a reduction in their social activity, time for themselves, or time for family. Caregivers in employment took several days off work in the past 3 months owing to caregiving, sometimes resulting in reduced income. Up to 79% of caregivers reported an impact on their physical or emotional well-being, and 57% reported deterioration in their objective health status. Inconsistencies stemming from differences in the three-level five-dimension EuroQol questionnaire and HF Caregiver Questionnaire were observed for the impact of caregiving on caregivers’ health-related quality of life.ConclusionAssisting patients with HF is associated with caregiver burden. Addressing the needs of caregivers may help to promote their continued support and improve patient outcomes.

Caregivers’ burden and other selected problems of patients treated for heart failure

“…As a result, they may have less time for friends and other family members. When assessing the impact of care on lifestyle, 33% of caregivers reported a significant reduction in social activity, and as many as 74% said that patient care had led to changes in their own plans or complete planning avoidance [30]. This is consistent with the studies of Negarandeh et al, in which 53% of the caregivers of HF patients were reported to suffer from social isolation.…”

“…The most frequent ailments included: stress, prolonged fatigue, lack of energy, sleep problems, migraines, and depression. It is all the more worrying that the majority of those who care for are older people, who feel the consequences of physical exhaustion much faster [30][31][32]. The deterioration of their health was related in particular to variables such as advanced age of the patient, a greater number of comorbidities, and worse functioning of the patient [33].…”

“…This is consistent with the studies of Negarandeh et al, in which 53% of the caregivers of HF patients were reported to suffer from social isolation. Moreover, in comparison to the general population, they showed a lower assessment of life satisfaction, which may also be a risk factor for increased mortality [30,39].…”

Burden of heart failure on patients from China: results from a cross-sectional survey

“… 30 , 31 Finally, the EQ-5D-3L has just 1 question that assesses the emotional well-being of patients (“I am not/moderately/extremely anxious or depressed”), so this element of HRQoL may be under-represented. 15 , 32 …”

“…PSCs were completed by the same patients, and caregiver self-completion questionnaires were completed by the informal caregivers of the patients (results gathered from the caregiver self-completion questionnaires have been reported by Jackson et al). 15 The questionnaires were developed empirically, and their pharmacometric properties were not systematically assessed. The questionnaires were developed with input from experts in HF care; the concepts deemed most relevant to patients were selected empirically, and not as result of a formal process defining a conceptual framework, endpoint model and content validity, usually required to validate a patient-reported outcome measure (Ref FDA Guidance for Industry.…”