Quality of life in caregivers compared with dialysis recipients: The Co‐ACTIVE sub‐study of the ACTIVE dialysis trial

Abstract

The authors compared quality of life (QOL) of caregivers of dialysis patients versus that of the patients themselves and found that the former had higher physical and equivalent mental QOL but poorer personal well-being than the Chinese population norm. ABSTRACT:Aim: To compare quality of life (QOL) of caregivers of dialysis patients with the cared for patients and population norms.Methods: The ACTIVE Dialysis study randomized participants to extended (median 24 h/week) or standard (median 12 h/week) haemodialysis hours for 12 months. A subgroup of participants and their nominated caregivers completed QOL questionnaires including the EuroQOL-5 Dimension-3 Level (EQ5D-3 L), short form-36 (SF-36, also allowing estimation of the SF-6D), as well as a bespoke questionnaire and the personal wellbeing index (PWI). Caregiver QOL was compared with dialysis patient QOL and predictors of caregiver QOL were determined using multivariable regression.Results: There were 54 patients and caregiver pairs, predominantly from China. Caregivers mean (SD) age was 53.4 (11.3) years, 60% were female, 71% cared for their spouse/partner, and 36% were educated to university level. Caregivers had better physical but similar mental QOL compared with dialysis patients (mean SF-36 physical component summary: 46.9 AE 8.7 vs 40.4 AE 10.2, P < 0.001; mental component summary: 47.8 AE 9.7 vs 49.6 AE 12.0, P = 0.84). Health utility measured with EQ5D-3 L was not significantly different between caregivers and dialysis patients (mean 0.869 AE 0.185 vs 0.798 AE 0.227, P = 0.083). Caregiver PWI was 43.7 AE 15.5, significantly lower than the Chinese population norm (68.2 AE 14.2, P < 0.001). Higher physical and mental QOL among caregivers was predicted by university education but not age, gender or daily hours caring.Conclusion: Caregivers have higher physical and equivalent mental QOL to dialysis patients but poorer personal well-being than the Chinese population. University education predicts better QOL and may be a surrogate for socioeconomic or other factors. (NCT00649298).In the United States, there are an estimated 14.7 million family and unpaid caregivers assisting 7.7 million communitydwelling people with disabilities. 1 In Australia, an estimated 1 in 8 of the population (2.86 million people) provide informal care for an average of 13 h each week, and if replaced with formal caregivers would cost the equivalent of 3.8% of gross domestic product. 2 Caregiving also has significant financial impact on the caregiver. In the United States, 78% of caregivers incur out-of-pocket expenses averaging US$6954 annually. 3 This burden falls disproportionately on the poor,

Quality of life among caregivers of people with end-stage kidney disease managed with dialysis or comprehensive conservative care

“…We also observed that caregivers of dialysis patients had worse mental health scores compared with the caregivers of conservative care patients indicating poorer mental health. We could not find any studies comparing these two treatment groups specifically, but found previous studies reporting greater impairment to mental health and vitality domains of HRQoL of caregivers of dialysis patients [12,44,45]. In the care-related quality of life, we observed that the domain of 'assistance from organisations and government' received lower scores in both treatment groups compared with other domains.…”

Investigating the relationship between quality of life and hope in family caregivers of hemodialysis patients and related factors

“…Tasks such as taking the patient to the hemodialysis center and staying with them during the process, preparing special foods, and taking patients to their physician’s office prevent family caregivers from taking care of their personal affairs and themselves [ 4 ]. Evidence shows that the caregivers of these patients deal with various problems and disorders, such as stress, depression, anxiety, lack of self-confidence, fatigue, social isolation, financial and communication limitations, poor marital adjustment, and low quality of life and sleep, which can disrupt their physical, social and emotional welfare [ 5 – 7 ]. The result of a study showed that though caring for hemodialysis patients threatens the caregiver’s psychological integrity, it provides the opportunity of development capabilities [ 8 ].…”

Impacts of Interaction of Mental Condition and Quality of Life between Donors and Recipients at Decision-Making of Preemptive and Post-Dialysis Living-Donor Kidney Transplantation

“…Several previous studies reported that the QOL and mental conditions of patients and their caregivers/families were affected negatively by chronic kidney disease and haemodialysis [ 42 , 43 , 44 ]. Clinically, scores lower than 40 for SF-36v2 are considered to indicate deterioration of QOL compared to the Japanese general population [ 10 , 31 ].…”