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

ABSTRACT: BACKGROUND:To measure health-related and care-related quality of life among informal caregivers of older people with end-stage kidney disease (ESKD), and to determine the association between caregiver quality of life and care recipient's treatment type. METHODS:A prospective cross-sectional study was conducted. Three renal units in the UK and Australia were included. Informal caregivers of people aged ?75?years with ESKD managed with dialysis or comprehensive conservative non-dialytic care (estimated glomerular filtration (eGFR) ?10?mL/min/1.73m2) participated. Health-related quality of life (HRQoL) was assessed using Short-Form six dimensions (SF-6D, 0-1 scale) and care-related quality of life was assessed using the Carer Experience Scale (CES, 0-100 scale). Linear regression assessed associations between care-recipient treatment type, caregiver characteristics and the SF-6D utility index and CES scores. RESULTS:Of 63 caregivers, 49 (78%) were from Australia, 26 (41%) cared for an older person managed with dialysis, and 37 (59%) cared for an older person managed with comprehensive conservative care. Overall, 73% were females, and the median age of the entire cohort was 76?years [IQR 68-81]. When adjusted for caregiver sociodemographic characteristics, caregivers reported significantly worse carer experience (CES score 15.73, 95% CI 5.78 to 25.68) for those managing an older person on dialysis compared with conservative care. However, no significant difference observed for carer HRQoL (SF-6D utility index -?0.08, 95% CI -?0.18 to 0.01) for those managing an older person on dialysis compared with conservative care. CONCLUSIONS:Our data suggest informal caregivers of older people on dialysis have significantly worse care-related quality of life (and therefore greater need for support) than those managed with comprehensive conservative care. It is important to consider the impact on caregivers' quality of life when considering treatment choices for their care recipients.

SUBMITTER: Shah KK

PROVIDER: S-EPMC7199363 | biostudies-literature | 2020 May

REPOSITORIES: biostudies-literature

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

Shah Karan K KK Murtagh Fliss E M FEM McGeechan Kevin K Crail Susan M SM Burns Aine A Morton Rachael L RL

BMC nephrology 20200504 1

<h4>Background</h4>To measure health-related and care-related quality of life among informal caregivers of older people with end-stage kidney disease (ESKD), and to determine the association between caregiver quality of life and care recipient's treatment type.<h4>Methods</h4>A prospective cross-sectional study was conducted. Three renal units in the UK and Australia were included. Informal caregivers of people aged ≥75 years with ESKD managed with dialysis or comprehensive conservative non-dial ...[more]

PMID: 32366220

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Project description:OBJECTIVE:To measure health-related quality of life (HRQoL) and well-being in older people with end-stage kidney disease (ESKD) and to determine the association between treatment type and sociodemographic characteristics on these outcome measures. In addition, to assess the convergent validity between the HRQoL and well-being measure and their feasibility and acceptability in this population. DESIGN:Prospective cross-sectional study. SETTING:Three renal units in the UK and Australia. PARTICIPANTS:129 patients with ESKD managed with dialysis or with an estimated glomerular filtration ≤10 mL/min/1.73 m2 and managed with comprehensive conservative, non-dialytic care. OUTCOME MEASURES:HRQoL and well-being were assessed using Short-Form six dimensions (SF-6D, 0-1 scale); Kidney Disease Quality of Life (KDQOL-36) (0-100 scale) and Investigating Choice Experiments Capability Measure-Older people (ICECAP-O, 0-1 scale). Linear regression assessed associations between treatment, HRQoL and well-being. Pearson's correlation coefficient assessed convergent validity between instruments. RESULTS:Median age of 81 years (IQR 78-85), 65% males; 83 (64%) were managed with dialysis and 46 (36%) with conservative care. When adjusted for treatment type and sociodemographic variables, those managed on dialysis reported lower mean SF-6D utility (-0.05, 95% CI -0.12 to 0.01); lower KDQOL Physical Component Summary score (-3.17, 95% CI -7.61 to 1.27); lower Mental Component Summary score (-2.41, 95% CI -7.66 to 2.84); lower quality of life due to burden (-28.59, 95% CI -41.77 to -15.42); symptoms (-5.93, 95% CI -14.61 to 2.73) and effects of kidney disease (-16.49, 95% CI -25.98 to -6.99) and lower overall ICECAP-O well-being (-0.07, 95% CI -0.16 to 0.02) than those managed conservatively. Correlation between ICECAP-O well-being and SF-6D utility scores was strong overall, 0.65 (p<0.001), but weak to moderate at domain level. CONCLUSIONS:Older people on dialysis report significantly higher burden and effects of kidney disease than those on conservative care. Lower HRQoL and well-being may be associated with dialysis treatment and should inform shared decision-making about treatment options. TRIAL REGISTRATION NUMBER:UK (IRAS project ID: 134360andREC reference 14/LO/0291) and Australia (R20140203 HREC/14/RAH/36).

Project description:BackgroundPatients with end-stage kidney disease, receiving haemodialysis rely increasingly on informal carers to help manage their debilitating chronic disease. Informal carers may experience a negative impact on their quality of life exacting a toll on their physical, social and emotional well-being. Informal carers of patients with end-stage kidney disease receiving haemodialysis have significant unmet needs which may include physical and psychological issues, financial disadvantage and social isolation. Poor experiences of informal carers may also impact the experience of the patients for whom they care. The needs of this group of informal caregivers have been largely neglected, with little emphasis placed on supportive interventions that might assist and support them in their caring role. The aim of this study is therefore to explore the experiences and unmet needs of informal carers of people with end-stage kidney disease receiving haemodialysis and develop a psychosocial intervention to support them in their caring role.MethodsThis qualitative study will include a systematic review, semi-structured interviews with 30 informal carers and focus groups with renal health care professionals. Perceptions of care provision, caregiving experiences as well as contextual factors impacting the design and delivery of a psychosocial intervention for informal carers of patients with end-stage kidney disease, will be explored and will inform the development of a supportive intervention.DiscussionThe needs of informal carers of patients with end-stage kidney disease have been neglected with little emphasis placed on supportive interventions that might assist and support this group in their care giving role. This is in contrast to other chronic disease groups such as stroke, cancer and dementia. In these conditions well developed supportive interventions have significantly improved outcomes in regard to informal caregivers' preparedness, competence, positive emotions and psychological well-being in terms of informal care provision. Support interventions could potentially improve the quality of life of those informal carers who provide care to patients with end-stage kidney disease receiving haemodialysis.

Project description:Most patients with end-stage renal disease (ESRD) benefit from a kidney transplant but there is limited information from developing countries like Uganda about the willingness of caregivers for patients with end-stage kidney disease to donate a kidney. In this cross-sectional study, we examined the magnitude and factors associated with the willingness of caregivers to donate a kidney to their patient with ESRD in Kampala, Uganda. The study was conducted at four health facilities that provide kidney dialysis in Kampala, Uganda. We used a structured questionnaire to interview caregivers for patients with ESRD. Caregivers who reported they would consider donating a kidney to a patient with ESRD were considered willing and the rest as unwilling. We summarized data using descriptive statistics and used an adjusted prevalence risk ratio (aPRR) from a generalized linear model to establish factors independently associated with willingness to donate.We enrolled 125 participants with a mean age of 32.3±9.8 years and found 68 (54.4%) participants were willing to donate a kidney for transplant. Willingness to donate a kidney was more likely among older caregivers namely those aged 25-34 years (aPRR, 1.15; 95% CI, 1.01-1.31) and ≥35 years (aPRR 1.16; 95% CI, 1.05-1.29) compared to those aged 18-24 years, females compared to males (aPRR, 1.30; 95% CI, 1.19-1.42), those with a positive attitude towards organ donation (aPRR, 1.24; 95% CI, 1.13-1.36), and when organ kidney donation was permissible by the participant's religious faith (aPRR, 1.11; 95% CI, 1.01-1.22). Conversely, willingness to donate a kidney was less likely when the family did not approve of kidney donation (aPRR, 0.80; 95% CI, 0.71-0.90). We concluded that more than half of caregivers to patients with ESRD are willing to donate a kidney for transplant. To improve the willingness of caregivers to patients with ESRD in donating a kidney, the social, religious, and personal barriers to kidney donation may need to be addressed.

Dataset Information

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

Publications

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

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