ArticleNephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association2011
Burden on caregivers as perceived by hemodialysis patients in the Frequent Hemodialysis Network (FHN) trials.
Article in Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 43 papers, 1 of them a synthesis that pooled it.
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Who cites it
43 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Home versus in-centre haemodialysis for people with kidney failure.The Cochrane database of systematic reviews · 2024Pooled it
- Occupational Priorities of People on Hemodialysis Who Participated in Energy Management Education.Canadian journal of occupational therapy. Revue canadienne d'ergotherapie · 2025Trial
- Effects of frequent hemodialysis on perceived caregiver burden in the Frequent Hemodialysis Network trials.Clinical journal of the American Society of Nephrology : CJASN · 2014Trial
- Factors associated with self-advocacy among patients receiving maintenance hemodialysis: a multicenter cross-sectional study using latent profile and network analysis.BMC nephrology · 2026Article
- Caregiver Perspectives on Supporting Kidney Transplant Recipients Through Graft Loss.Kidney international reports · 2026Article
- Long-term frailty progression and mortality in hemodialysis: Impact of dialysis duration and baseline frailty in a nationwide Japanese cohort.Clinical and experimental nephrology · 2026Article
- Depression and Advance Care Planning Among Japanese Patients Undergoing Hemodialysis: Japanese Dialysis Outcomes and Practice Pattern Study (J-DOPPS).Kidney medicine · 2026Article
- Caregiver Perspectives for Pediatric Patients with Acute Kidney Injury on Dialysis: A Narrative Review.Journal of multidisciplinary healthcare · 2026Review
- Assessing Caregiver Burden in Kidney Failure: A Systematic Review of Measurement Properties of Instruments.Kidney medicine · 2025Review
- Burden level and quality of life of caregivers of hemodialysis patient's in central India: a mixed-method cross-sectional study.BMC research notes · 2025Article
- The Burden of Home Dialysis: An Overlooked Challenge.Clinical journal of the American Society of Nephrology : CJASN · 2024Review
- Relationship between family function, self-perceived burden and loneliness in patients with type 2 diabetes mellitus: a cross-lagged analysis.Acta diabetologica · 2024Article
- Long-term survival of patients receiving home hemodialysis with self-punctured arteriovenous access.PloS one · 2024Observational
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- Article
- Impact of the teach-back method on caregiver outcomes using the "Timing it Right" framework for hemodialysis patients.Frontiers in public health · 2023Article
- Informal Caregiving Networks of Older Adults With Dementia Superimposed on Multimorbidity: A Social Network Analysis Study.Innovation in aging · 2023Article
- Assessing Burden, Anxiety, Depression, and Quality of Life among Caregivers of Hemodialysis Patients in Indonesia: A Cross-Sectional Study.International journal of environmental research and public health · 2022Article
- Mobility in Older Adults Receiving Maintenance Hemodialysis: A Qualitative Study.American journal of kidney diseases : the official journal of the National Kidney Foundation · 2022Article
- The Lived Experience of Primary Family Caregivers of Patients on Hemodialysis Treatment in Southern Ethiopia: A Phenomenological Study.International journal of nephrology and renovascular disease · 2022Article
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Funding
Abstract
backgroundPatients with end-stage renal disease often rely on unpaid caregivers to assist them with their daily living and medical needs. We characterized the degree to which patients enrolled in the Frequent Hemodialysis Network (FHN) trials perceived burden on their unpaid caregivers.
methodsParticipants completed the Cousineau Perceived Burden Scale, a 10-question scale previously developed in hemodialysis (HD) patients. Associations between baseline burden score and prespecified variables were evaluated using multivariable linear regression.
resultsOf 412 participants, 236 (57%) reported having unpaid caregivers. Compared to those without unpaid caregivers, these participants had greater comorbidity (Charlson mean 1.8 ± 1.8 versus 1.2 ± 1.7, P < 0.001), lower Short Form-36 (SF-36) Physical Health Composite (PHC) scores (median 33 versus 41, P < 0.001, higher Beck Depression scores (mean 16 ± 11 versus 12 ± 9, P < 0.001), and worse physical function. Median Cousineau score was 35 (interquartile range 20-53) (theoretical range 0-100). Over 50% felt their caregivers were overextended, yet 60% were confident that their caregivers could handle the demands of caring for them. Higher perceived burden was not associated with ability to be randomized. In adjusted analyses, Cousineau score was inversely associated with SF-36 PHC and Mental Health Composite scores and directly associated with Beck Depression score (each P < 0.001).
conclusionsMost HD patients in the FHN trials perceived substantial burden on their unpaid caregivers, and self-perceived burden was associated with worse depression and quality of life. Evaluation of the effects of frequent HD on perceived burden borne by caregivers in the FHN trials will help to establish the net benefits/determents of these intensive dialytic strategies.
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