Advertisement
American Journal of Kidney Diseases

Burden of Care and Quality of Life Among Caregivers for Adults Receiving Maintenance Dialysis: A Systematic Review

  • Elise L. Gilbertson
    Affiliations
    Department of Nephrology, Sunshine Coast Clinical School, Sunshine Coast University Hospital, Birtinya, Queensland

    The University of Queensland, Sunshine Coast Clinical School, Sunshine Coast University Hospital, Birtinya, Queensland
    Search for articles by this author
  • Rathika Krishnasamy
    Affiliations
    Department of Nephrology, Sunshine Coast Clinical School, Sunshine Coast University Hospital, Birtinya, Queensland

    The University of Queensland, Sunshine Coast Clinical School, Sunshine Coast University Hospital, Birtinya, Queensland
    Search for articles by this author
  • Celine Foote
    Affiliations
    The George Institute for Global Health, UNSW, Sydney, New South Wales, Australia

    Concord and Repatriation General Hospital, Concord, New South Wales, Australia
    Search for articles by this author
  • Alice L. Kennard
    Affiliations
    Department of Nephrology, Sunshine Coast Clinical School, Sunshine Coast University Hospital, Birtinya, Queensland
    Search for articles by this author
  • Meg J. Jardine
    Affiliations
    The George Institute for Global Health, UNSW, Sydney, New South Wales, Australia

    Concord and Repatriation General Hospital, Concord, New South Wales, Australia
    Search for articles by this author
  • Nicholas A. Gray
    Correspondence
    Address for Correspondence: Nicholas Gray, MBBS, Renal Unit, Sunshine Coast University Hospital, 6 Doherty Street, Birtinya, Queensland, 4575, Australia.
    Affiliations
    Department of Nephrology, Sunshine Coast Clinical School, Sunshine Coast University Hospital, Birtinya, Queensland

    The University of Queensland, Sunshine Coast Clinical School, Sunshine Coast University Hospital, Birtinya, Queensland
    Search for articles by this author
Published:November 16, 2018DOI:https://doi.org/10.1053/j.ajkd.2018.09.006

      Rationale & Objective

      Dialysis is a burdensome and complex treatment for which many recipients require support from caregivers. The impact of caring for people dependent on dialysis on the quality of life of the caregivers has been incompletely characterized.

      Study Design

      Systematic review of quantitative studies of quality of life and burden to caregivers.

      Setting & Study Population

      Caregivers of adults receiving maintenance dialysis.

      Selection Criteria for Studies

      The Cochrane Library, Embase, PsycINFO, CINAHL, PubMed, and MEDLINE were systematically searched from inception until December 2016 for quantitative studies of caregivers. Pediatric and non–English language studies were excluded. Study quality was assessed using a modified Newcastle-Ottawa scale.

      Data Extraction

      2 independent reviewers selected studies and extracted data using a prespecified extraction instrument.

      Analytical Approach

      Descriptive reports of demographics, measurement scales, and outcomes. Quantitative meta-analysis using random effects when possible.

      Results

      61 studies were identified that included 5,367 caregivers from 21 countries and assessed the impact on caregivers using 70 different scales. Most (85%) studies were cross-sectional. The largest identified group of caregivers was female spouses who cared for recipients of facility-based hemodialysis (72.3%) or peritoneal dialysis (20.6%). Caregiver quality of life was poorer than in the general population, mostly comparable with caregivers of people with other chronic diseases, and often better than experienced by the dialysis patients cared for. Caregiver quality of life was comparable across dialysis modalities.

      Limitations

      Heterogeneity in study design and outcome measures made comparisons between studies difficult and precluded quantitative meta-analysis. Study quality was generally poor.

      Conclusions

      Quality of life of caregivers of dialysis recipients is poorer than in the general population and comparable to that of caregivers of individuals with other chronic diseases. The impact of caring for recipients of home hemodialysis or changes in the impact of caring over time have not been well studied. Further research is needed to optimally inform dialysis programs how to educate and support caregivers.

      Index Words

      Caregivers and partners play an integral role in the management of many chronic diseases.
      • Cantor M.H.
      Strain among caregivers: a study of experience in the United States.
      • Sherwood P.R.
      • Given C.W.
      • Given B.A.
      • von Eye A.
      Caregiver burden and depressive symptoms: analysis of common outcomes in caregivers of elderly patients.
      • Schulz R.
      • Beach S.R.
      Caregiving as a risk factor for mortality: the Caregiver Health Effects Study.
      • McMillan S.C.
      • Small B.J.
      • Weitzner M.
      • et al.
      Impact of coping skills intervention with family caregivers of hospice patients with cancer: a randomized clinical trial.
      • Haley W.E.
      • Levine E.G.
      • Brown S.L.
      • Berry J.W.
      • Hughes G.H.
      Psychological, social, and health consequences of caring for a relative with senile dementia.
      In the United States, there are an estimated 14.7 million family and unpaid caregivers for people living in the community with disabilities and an estimated 78% of caregivers incur out-of-pocket expenses averaging US $6,954 annually.
      • Rainville C.
      • Skufca L.
      • Mehegan L.
      Dialysis for the management of kidney failure represents perhaps one of the more burdensome ongoing medical interventions, encompassing mental, physical, financial, and social demands. The adverse impact of kidney failure on patient quality of life (QoL) is widely acknowledged.
      • McClellan W.M.
      • Stanwyck D.J.
      • Anson C.A.
      Social support and subsequent mortality among patients with end-stage renal disease.
      • Morton R.L.
      • Tong A.
      • Howard K.
      • Snelling P.
      • Webster A.C.
      The views of patients and carers in treatment decision making for chronic kidney disease: systematic review and thematic synthesis of qualitative studies.
      • Evans R.W.
      • Manninen D.L.
      • Garrison Jr., L.P.
      • et al.
      The quality of life of patients with end-stage renal disease.
      • Johnson J.P.
      • McCauley C.R.
      • Copley J.B.
      The quality of life of hemodialysis and transplant patients.
      • Iyasere O.U.
      • Brown E.A.
      • Johansson L.
      • et al.
      Quality of life and physical function in older patients on dialysis: a comparison of assisted peritoneal dialysis with hemodialysis.
      The potential impact of caring for people with kidney failure treated by dialysis on the QoL of the caregivers is less often discussed.
      The prevalence of dialysis dependence is increasing, with the greatest growth among the elderly, who typically have increased comorbid conditions and potentially greater care needs.
      • Saran R.
      • Robinson B.
      • Abbott K.C.
      • et al.
      US Renal Data System 2017 Annual Data Report: epidemiology of kidney disease in the United States.
      • Gilg J.
      • Pruthi R.
      • Fogarty D.
      UK Renal Registry 17th Annual Report: chapter 1 UK renal replacement therapy incidence in 2013: national and centre-specific analyses.

      ANZDATA Registry. The 39th Annual ANZDATA Report (2016), Chapter 4: Haemodialysis. Australia and New Zealand Dialysis and Transplant Registry, Adelaide, Australia. 2017. http://www.anzdata.org.au/anzdata/AnzdataReport/40thReport/c04_haemodialysis_2016_v2.0_20180709.pdf. Accessed November 1, 2018.

      Canadian Institute for Health Information. Canadian Organ Replacement Register Annual Report: Treatment of End-Stage Organ Failure in Canada, 2004 to 2014. Ottawa, ON: CIHI; 2016

      • Murray A.M.
      Cognitive impairment in the aging dialysis and chronic kidney disease populations: an occult burden.
      The older age among dialysis recipients is often associated with advancing age among caregivers, who are often lifetime partners.
      • Asti T.
      • Kara M.
      • Ipek G.
      • Erci B.
      The experiences of loneliness, depression, and social support of Turkish patients with continuous ambulatory peritoneal dialysis and their caregivers.
      • Campbell A.R.
      Family caregivers: caring for aging end-stage renal disease partners.
      Although most dialysis therapy is administered in facilities by professional health staff, a substantial minority of recipients undertake dialysis therapy at home. There is some evidence that home dialysis therapy, either as peritoneal dialysis (PD) or home hemodialysis (HD), is associated with improved QoL for recipients.
      • Derrett S.
      • Samaranayaka A.
      • Schollum J.B.W.
      • et al.
      Predictors of health deterioration among older adults after 12 months of dialysis therapy: a longitudinal cohort study from New Zealand.
      • Wyld M.
      • Morton R.L.
      • Hayen A.
      • Howard K.
      • Webster A.C.
      A systematic review and meta-analysis of utility-based quality of life in chronic kidney disease treatments.
      However, improved health outcomes for recipients and lower costs for providers may risk medicalizing the home and imposing increased responsibility on caregivers.
      • Derrett S.
      • Samaranayaka A.
      • Schollum J.B.W.
      • et al.
      Predictors of health deterioration among older adults after 12 months of dialysis therapy: a longitudinal cohort study from New Zealand.
      • Wyld M.
      • Morton R.L.
      • Hayen A.
      • Howard K.
      • Webster A.C.
      A systematic review and meta-analysis of utility-based quality of life in chronic kidney disease treatments.
      Our primary aim was to systematically review studies that quantitatively evaluated caregiver QoL and burden of caregiving for adult dialysis recipients. Secondary aims included demographic profiling of caregivers, details of measurement scales used by investigators, and comparing QoL of caregivers of dialysis recipients with other caregivers, the general population, and the dialysis recipients themselves. Last, we compared QoL of caregivers of people undergoing different dialysis modalities.

      Methods

      Search Strategy and Inclusion Criteria

      A prespecified search strategy (Item S1) was used to identify studies published before January 1, 2017, that reported the burden or QoL of caregivers of dialysis (facility HD, home HD, or PD) patients. Electronic databases including The Cochrane Library, Embase, PsycINFO, CINAHL, PubMed, and MEDLINE were systematically searched with an English language restriction. Unpublished studies were identified, when possible, by abstracts of conference proceedings, as well as reference lists of relevant studies and review articles.
      Two investigators independently evaluated the title and abstract of each study identified from the search for potential inclusion. Any citations without electronically available abstracts were discarded unless the title was convincing of the study’s relevance. When there was disagreement between the 2 reviewers, a third investigator adjudicated. A second round of title and abstract review was undertaken to select only quantitative studies involving caregivers of adult patients.
      Inclusion criteria limited the systematic review to original investigations, with review articles and commentaries excluded. Other excluded studies used qualitative measures to assess QoL. Studies with >50% of participants being caregivers for non–dialysis-dependent patients (patients with earlier stages of chronic kidney disease, kidney transplant recipients, or patients with other chronic diseases) were also excluded. Caregivers of pediatric dialysis patients were excluded because the issues for children were considered unique.
      Full-text articles of each manuscript considered for inclusion based on title and abstract were reviewed independently by 2 investigators. If there was disagreement about whether a study should be included, a third reviewer adjudicated.

      Data Extraction and Trial Quality Assessment

      A prespecified data extraction instrument was used to collect data from identified studies. Data extraction was completed independently by 2 reviewers with disagreements resolved by consensus. When more than 1 publication of one study existed, reports were grouped together to include the most complete data.
      Specific data collected included study design, country, recruitment era, sample size, and dialysis modality. Caregiver data collected included age, sex, relationship to patient, time spent caregiving, education level, and employment status. The scales used to measure various aspects of QoL and/or burden were documented. Comparator groups or any interventions used were noted.
      Study quality and risk of bias were assessed using the Newcastle-Ottawa scale,

      Wells GAS, O'Connell B, Peterson D, Welch JV, Losos M, Tugwell P. The Newcastle-Ottawa Scale (NOS) for assessing the quality of nonrandomised studies in meta-analyses 2017. www.ohri.ca/prorams/clinical_epidemiology/oxford.asp. Accessed July 21, 2017.

      which has been validated for use in both case-control and cohort studies.
      • Stang A.
      Critical evaluation of the Newcastle-Ottawa scale for the assessment of the quality of nonrandomized studies in meta-analyses.
      • Rotenstein L.S.
      • Ramos M.A.
      • Torre M.
      • et al.
      Prevalence of depression, depressive symptoms, and suicidal ideation among medical students: a systematic review and meta-analysis.
      Two authors independently assessed each study for risk of bias using a modified scale including sample representativeness; sample size; comparability with nonrespondents; ascertainment of QoL, burden, or depression; and quality of descriptive statistics reporting (Item S2). Studies were judged low (≥3 points) or high (<3 points) risk of bias.
      Continuous data were analyzed using mean differences and their 95% confidence intervals, and dichotomous data were expressed as relative risk and 95% confidence interval. When possible, meta-analysis using a random-effects model was planned using the DerSimonian-Laird approach with sensitivity analysis using the method of residual maximum likelihood. All statistical analyses were conducted using Review Manager (RevMan), version 5.3 Copenhagen (The Nordic Cochrane Centre, The Cochrane Collaboration, 2014) and R, version 3.5.1. P < 0.05 was considered to be significant.

      Results

      Literature Search and Study Characteristics

      The search strategy yielded 1,072 articles, of which 86 underwent full-text review (Fig 1). Another 25 were excluded, leaving 61 papers meeting the inclusion/exclusion criteria (Tables 1 and S1). There were 17 studies published before 2000
      • Blogg A.E.
      • O'Shaughnessy D.V.
      • Cairns D.R.
      Levels and predictors of distress in home hemodialysis caregivers.
      • Dunn S.A.
      • Lewis S.L.
      • Bonner P.N.
      • Meize-Grochowski R.
      Quality of life for spouses of CAPD patients.
      • Finkelstein F.O.
      • Finkelstein S.H.
      • Steele T.E.
      Assessment of marital relationships of hemodialysis patients.
      • Page S.
      • Weisberg M.B.
      Marital and family characteristics of home and hospital dialysis patients.
      • Peterson K.J.
      Psychosocial adjustment of the family caregiver: home hemodialysis as an example.
      • Rideout E.M.
      • Rodin G.M.
      • Littlefield C.H.
      Stress, social support, and symptoms of depression in spouses of the medically ill.
      • Schoeneman S.Z.
      • Reznikoff M.
      • Bacon S.J.
      Personality variables in coping with the stress of a spouse's chronic illness.
      • Simone S.
      Multi-dimensional assessment of the effects of dialysis on the marital relationship.
      • Soskolne V.
      The effect of ethnic origin on personality resources and psychophysiological health in a chronic stress situation: the case of spouses of dialysis patients.
      • Soskolne V.
      • De-Nour A.K.
      Psychosocial adjustment of home hemodialysis, continuous ambulatory peritoneal dialysis and hospital dialysis patients and their spouses.
      • Soskolne V.
      • Kaplan De-Nour A.
      The psychosocial adjustment of patients and spouses to dialysis treatment.
      • Srivastava R.H.
      Coping strategies used by spouses of CAPD patients.
      • Wicks M.N.
      • Milstead E.J.
      • Hathaway D.K.
      • Cetingok M.
      Subjective burden and quality of life in family caregivers of patients with end stage renal disease.
      • Brackney B.
      The impact of hemodialysis on the marital dyad.
      • Daly R.J.
      • Hassall C.
      Reported sleep on maintenance haemodialysis.
      • Hener T.
      • Weisenberg M.
      • Har-Even D.
      Supportive versus cognitive-behavioral intervention programs in achieving adjustment to home peritoneal kidney dialysis.
      • Lowry M.R.
      • Atcherson E.
      Spouse-assistants' adjustment to home hemodialysis.
      and 44 from 2000 to December 2016.
      • Asti T.
      • Kara M.
      • Ipek G.
      • Erci B.
      The experiences of loneliness, depression, and social support of Turkish patients with continuous ambulatory peritoneal dialysis and their caregivers.
      • Alvarez-Ude F.
      • Valdes C.
      • Estebanez C.
      • Rebollo P.
      Health-related quality of life of family caregivers of dialysis patients.
      • Anees M.
      • Hameed F.
      • Mumtaz A.
      • Ibrahim M.
      • Saeed Khan M.N.
      Dialysis-related factors affecting quality of life in patients on hemodialysis.
      • Belasco A.
      • Barbosa D.
      • Bettencourt A.R.
      • Diccini S.
      • Sesso R.
      Quality of life of family caregivers of elderly patients on hemodialysis and peritoneal dialysis.
      • Belasco A.G.
      • Sesso R.
      Burden and quality of life of caregivers for hemodialysis patients.
      • Byers D.J.
      • Mona N.W.
      • Beard T.H.
      Depressive symptoms and health promotion behaviors of African-American women who are family caregivers of hemodialysis recipients.
      • Celik G.
      • Annagur B.B.
      • Yilmaz M.
      • Demir T.
      • Kara F.
      Are sleep and life quality of family caregivers affected as much as those of hemodialysis patients?.
      • Courts N.F.
      Psychosocial adjustment of patients on home hemodialysis and their dialysis partners.
      • Daneker B.
      • Kimmel P.L.
      • Ranich T.
      • Peterson R.A.
      Depression and marital dissatisfaction in patients with end-stage renal disease and in their spouses.
      • Fan S.L.
      • Sathick I.
      • McKitty K.
      • Punzalan S.
      Quality of life of caregivers and patients on peritoneal dialysis.
      • Ferrario S.R.
      • Zotti A.M.
      • Baroni A.
      • Cavagnino A.
      • Fornara R.
      Emotional reactions and practical problems of the caregivers of hemodialysed patients.
      • Harris T.
      Burden and health in caregivers of persons with kidney disease.
      • Harris T.T.
      • Thomas C.M.
      • Wicks M.N.
      • Faulkner M.S.
      • Hathaway D.K.
      Subjective burden in young and older African-American caregivers of patients with end stage renal disease awaiting transplant.
      • Khaira A.
      • Mahajan S.
      • Khatri P.
      • Bhowmik D.
      • Gupta S.
      • Agarwal S.K.
      Depression and marital dissatisfaction among Indian hemodialysis patients and their spouses: a cross-sectional study.
      • Klak R.
      • Rymaszewska J.
      • Watorek E.
      • et al.
      Exhaustion of caregivers of patients on maintenance haemodialysis [letter to the editor].
      • Lindqvist R.
      • Carlsson M.
      • Sjoden P.O.
      Coping strategies and health-related quality of life among spouses of continuous ambulatory peritoneal dialysis, haemodialysis, and transplant patients.
      • Matsuu K.
      • Washio M.
      • Arai Y.
      • et al.
      Depression among caregivers of elderly patients on chronic hemodialysis.
      • Morelon E.
      • Berthoux F.
      • Brun-Strang C.
      • Fior S.
      • Volle R.
      Partners' concerns, needs and expectations in ESRD: results of the CODIT Study.
      • Piira T.
      • Chow J.
      • Suranyi M.
      The role of cognitive factors in the adjustment of home dialysis carers.
      • Rahim A.
      • Alhani F.
      • Ahmadi F.
      • Gholyaf M.
      • Akhoond M.R.
      Effects of a continuous care model on perceived quality of life of spouses of haemodialysis patients.
      • Rai M.
      • Rustagi T.
      • Rustagi S.
      • Kohli R.
      Depression, insomnia and sleep apnea in patients on maintenance hemodialysis.
      • Rioux J.P.
      • Narayanan R.
      • Chan C.T.
      Caregiver burden among nocturnal home hemodialysis patients.
      • Schneider R.
      The SF-36 and the MFI-20 in assessing fatigue among female caregivers of male hemodialysis patients.
      • Schneider R.A.
      Chronic renal failure: assessing the Fatigue Severity Scale for use among caregivers.
      • Sezer M.T.
      • Eren I.
      • Ozcankaya R.
      • Civi I.
      • Erturk J.
      • Ozturk M.
      Psychological symptoms are greater in caregivers of patients on hemodialysis than those of peritoneal dialysis.
      • Shimoyama S.
      • Hirakawa O.
      • Yahiro K.
      • Mizumachi T.
      • Schreiner A.
      • Kakuma T.
      Health-related quality of life and caregiver burden among peritoneal dialysis patients and their family caregivers in Japan.
      • Yilmaz A.
      • Kocak O.M.
      • Aygor B.
      • et al.
      Sexual functioning in hemodialysis patients and their spouses: results of a prospective study from Turkey.
      • Pruchno R.
      • Wilson-Genderson M.
      • Cartwright F.P.
      Depressive symptoms and marital satisfaction in the context of chronic disease: a longitudinal dyadic analysis.
      • Starzomski R.
      • Hilton A.
      Patient and family adjustment to kidney transplantation with and without an interim period of dialysis.
      • Avsar U.
      • Avsar U.Z.
      • Cansever Z.
      • et al.
      Psychological and emotional status, and caregiver burden in caregivers of patients with peritoneal dialysis compared with caregivers of patients with renal transplantation.
      • Mollaoglu M.
      • Kayatas M.
      • Yurugen B.
      Effects on caregiver burden of education related to home care in patients undergoing hemodialysis.
      • Saeed Z.
      • Ahmad A.M.
      • Shakoor A.
      • Ghafoor F.
      • Kanwal S.
      Depression in patients on hemodialysis and their caregivers.
      • Washio M.
      • Yoshido H.
      • Ura N.
      • et al.
      Burden among family caregivers of patients on chronic hemodialysis in northern Japan.
      • Sezer S.
      • Uyar M.E.
      • Bal Z.
      • Tutal E.
      • Ozdemir Acar F.N.
      The influence of socioeconomic factors on depression in maintenance hemodialysis patients and their caregivers.
      • Kang A.
      • Yu Z.
      • Foo M.
      • et al.
      A longitudinal study of burden, quality of life and emotional distress in caregivers of peritoneal dialysis patients.
      • Parlevliet J.L.
      • Buurman B.M.
      • Pannekeet M.M.
      • et al.
      Systematic comprehensive geriatric assessment in elderly patients on chronic dialysis: a cross-sectional comparative and feasibility study.
      • Suri R.S.
      • Larive B.
      • Hall Y.
      • et al.
      Effects of frequent hemodialysis on perceived caregiver burden in the Frequent Hemodialysis Network trials.
      • Antonaki E.
      • Xidakis D.
      Determinants of burden and quality of life in caregivers of dialysis patients in a descriptive cross sectional study [poster].
      • Jiang H.
      • Wang L.
      • Zhang Q.
      • et al.
      Family functioning, marital satisfaction and social support in hemodialysis patients and their spouses.
      • Avsar U.
      • Avsar U.Z.
      • Cansever Z.
      • et al.
      Caregiver burden, anxiety, depression, and sleep quality differences in caregivers of hemodialysis patients compared with renal transplant patients.
      • Yu Z.L.
      • Seow Y.Y.
      • Seow P.S.
      • Tan B.L.
      Effectiveness of a day care program in supporting patients on peritoneal dialysis and their caregivers.
      • Cantekin I.
      • Kavurmaci M.
      • Tan M.
      An analysis of caregiver burden of patients with hemodialysis and peritoneal dialysis.
      • Griva K.
      • Goh C.S.
      • Kang W.C.
      • et al.
      Quality of life and emotional distress in patients and burden in caregivers: a comparison between assisted peritoneal dialysis and self-care peritoneal dialysis.
      • Al Wakeel J.S.
      • Bayoumi M.M.
      Caregiver burden among peritoneal dialysis and hemodialysis family in Saudi Arabia.
      Table 1Characteristics of Included Studies
      StudyCountryDesignNCaregiverEmployedDialysis Modality
      FemaleAge
      Values given as mean±SD, median [interquartile range], or mean (range).
      FHDHHDPD
      Blogg
      • Blogg A.E.
      • O'Shaughnessy D.V.
      • Cairns D.R.
      Levels and predictors of distress in home hemodialysis caregivers.
      (1999)
      AUCS6168.9%NA36.67%0%100%0%
      Piira
      • Piira T.
      • Chow J.
      • Suranyi M.
      The role of cognitive factors in the adjustment of home dialysis carers.
      (2002)
      AUCS3852.6%HHD: 51.11 ± 8.77; PD: 54.55 ± 17.17NA0%39.5%60.5%
      Belasco
      • Belasco A.G.
      • Sesso R.
      Burden and quality of life of caregivers for hemodialysis patients.
      (2002)
      BRCS10084%46.4 ± 1.634%100%0%0%
      Belasco
      • Belasco A.
      • Barbosa D.
      • Bettencourt A.R.
      • Diccini S.
      • Sesso R.
      Quality of life of family caregivers of elderly patients on hemodialysis and peritoneal dialysis.
      (2006)
      BRCS12480.1%FHD: 57.5 ± 16; PD: 52.1 ± 14.132.34%80.1%0%19.9%
      Rideout
      • Rideout E.M.
      • Rodin G.M.
      • Littlefield C.H.
      Stress, social support, and symptoms of depression in spouses of the medically ill.
      (1990)
      CACS4065%51
      Mean (no SD available).
      NA25%0%75%
      Rioux
      • Rioux J.P.
      • Narayanan R.
      • Chan C.T.
      Caregiver burden among nocturnal home hemodialysis patients.
      (2012)
      CACS3266%51 ± 11NA0%100%
      Nocturnal HD.
      0%
      Srivastava
      • Srivastava R.H.
      Coping strategies used by spouses of CAPD patients.
      (1988)
      CACS3076.7%55.4 (28-75)NA0%0%100%
      Starzomski
      • Starzomski R.
      • Hilton A.
      Patient and family adjustment to kidney transplantation with and without an interim period of dialysis.
      (2000)
      CACS, LC6768.7%NANA65.7%0%34.3%
      Suri
      • Suri R.S.
      • Larive B.
      • Hall Y.
      • et al.
      Effects of frequent hemodialysis on perceived caregiver burden in the Frequent Hemodialysis Network trials.
      (2014)
      CA, USLC188NANANA68.4%31.6%0%
      Jiang
      • Jiang H.
      • Wang L.
      • Zhang Q.
      • et al.
      Family functioning, marital satisfaction and social support in hemodialysis patients and their spouses.
      (2015)
      CNCS3852.6%55.8 ± 12.960.5%100%0%0%
      Morelon
      • Morelon E.
      • Berthoux F.
      • Brun-Strang C.
      • Fior S.
      • Volle R.
      Partners' concerns, needs and expectations in ESRD: results of the CODIT Study.
      (2005)
      FRCS98872%60.8
      Mean (no SD available).
      78.6100%0%0%
      Antonaki
      • Antonaki E.
      • Xidakis D.
      Determinants of burden and quality of life in caregivers of dialysis patients in a descriptive cross sectional study [poster].
      (2016)
      GRCS13355.6%NANA100%0%0%
      Khaira
      • Khaira A.
      • Mahajan S.
      • Khatri P.
      • Bhowmik D.
      • Gupta S.
      • Agarwal S.K.
      Depression and marital dissatisfaction among Indian hemodialysis patients and their spouses: a cross-sectional study.
      (2012)
      INCS4965.3%41.9 ± 12.5NA100%0%0%
      Rai
      • Rai M.
      • Rustagi T.
      • Rustagi S.
      • Kohli R.
      Depression, insomnia and sleep apnea in patients on maintenance hemodialysis.
      (2011)
      INCS69NANANA100%0%0%
      Rahim
      • Rahim A.
      • Alhani F.
      • Ahmadi F.
      • Gholyaf M.
      • Akhoond M.R.
      Effects of a continuous care model on perceived quality of life of spouses of haemodialysis patients.
      (2009)
      IRLC3650%NA55.6%100%0%0%
      Hener
      • Hener T.
      • Weisenberg M.
      • Har-Even D.
      Supportive versus cognitive-behavioral intervention programs in achieving adjustment to home peritoneal kidney dialysis.
      (1996)
      ILRCT6066.7%51.1 ± 10.7NA0%0%100%
      Soskolne
      • Soskolne V.
      The effect of ethnic origin on personality resources and psychophysiological health in a chronic stress situation: the case of spouses of dialysis patients.
      (1984)
      ILCS12062.5%48
      Mean (no SD available).
      NA100%0%0%
      Soskolne
      • Soskolne V.
      • De-Nour A.K.
      Psychosocial adjustment of home hemodialysis, continuous ambulatory peritoneal dialysis and hospital dialysis patients and their spouses.
      (1987)
      ILCS6379.4%HHD: 50.2 ± 10.1; PD: 54.5 ± 10.7NA0%46%54%
      Soskolne
      • Soskolne V.
      • Kaplan De-Nour A.
      The psychosocial adjustment of patients and spouses to dialysis treatment.
      (1989)
      ILCS6876.5%♀: 53 ± 11.6; ♂: 58.5 ± 11.4NA100%0%0%
      Ferrario
      • Ferrario S.R.
      • Zotti A.M.
      • Baroni A.
      • Cavagnino A.
      • Fornara R.
      Emotional reactions and practical problems of the caregivers of hemodialysed patients.
      (2002)
      ITCS5080%54.16 ± 13.2226%100%0%0%
      Matsuu
      • Matsuu K.
      • Washio M.
      • Arai Y.
      • et al.
      Depression among caregivers of elderly patients on chronic hemodialysis.
      (2001)
      JPCS4388%25%, 42%, & 33% are age 50-59, 60-69, & ≥70NA100%0%0%
      Shimoyama
      • Shimoyama S.
      • Hirakawa O.
      • Yahiro K.
      • Mizumachi T.
      • Schreiner A.
      • Kakuma T.
      Health-related quality of life and caregiver burden among peritoneal dialysis patients and their family caregivers in Japan.
      (2003)
      JPCS3461.7%Primary group (n = 22): 50.7 ± 11.7; respite group (n = 12): 38.5 ± 19.267.63%0%0%100%
      Washio
      • Washio M.
      • Yoshido H.
      • Ura N.
      • et al.
      Burden among family caregivers of patients on chronic hemodialysis in northern Japan.
      (2012)
      JPCS10876.9%Heavy burden group (n = 48): 64 ± 12; light burden group (n = 60): 61.7 ± 12.529.5%100%0%0%
      Parlevliet
      • Parlevliet J.L.
      • Buurman B.M.
      • Pannekeet M.M.
      • et al.
      Systematic comprehensive geriatric assessment in elderly patients on chronic dialysis: a cross-sectional comparative and feasibility study.
      (2012)
      NLCS50NANANA76.6023.4
      Anees
      • Anees M.
      • Hameed F.
      • Mumtaz A.
      • Ibrahim M.
      • Saeed Khan M.N.
      Dialysis-related factors affecting quality of life in patients on hemodialysis.
      (2011)
      PKCS50NA59.46 ± 12.56NA100%0%0%
      Saeed
      • Saeed Z.
      • Ahmad A.M.
      • Shakoor A.
      • Ghafoor F.
      • Kanwal S.
      Depression in patients on hemodialysis and their caregivers.
      (2012)
      PKCS18043.3%48 (19-76)39.44100%0%0%
      Klak
      • Klak R.
      • Rymaszewska J.
      • Watorek E.
      • et al.
      Exhaustion of caregivers of patients on maintenance haemodialysis [letter to the editor].
      (2008)
      PLCS3080%65 ± 11.21NA83.3016.7
      Al Wakeel
      • Al Wakeel J.S.
      • Bayoumi M.M.
      Caregiver burden among peritoneal dialysis and hemodialysis family in Saudi Arabia.
      (2016)
      SACS105FHD: 70%; PD: 78.2%FHD: 40.6 ± 11; PD: 37.5 ± 9.135.2447.6052.4
      Griva
      • Griva K.
      • Goh C.S.
      • Kang W.C.
      • et al.
      Quality of life and emotional distress in patients and burden in caregivers: a comparison between assisted peritoneal dialysis and self-care peritoneal dialysis.
      (2016)
      SGCS11172.9%45.13 ± 14.0161.10%0%100%
      Kang
      • Kang A.
      • Yu Z.
      • Foo M.
      • et al.
      A longitudinal study of burden, quality of life and emotional distress in caregivers of peritoneal dialysis patients.
      (2014)
      SGLCCS: 86; LC: 44NANANA0%0%100%
      Yu
      • Yu Z.L.
      • Seow Y.Y.
      • Seow P.S.
      • Tan B.L.
      Effectiveness of a day care program in supporting patients on peritoneal dialysis and their caregivers.
      (2016)
      SGCase series3NANANA0%0%100%
      Alvarez-Ude
      • Alvarez-Ude F.
      • Valdes C.
      • Estebanez C.
      • Rebollo P.
      Health-related quality of life of family caregivers of dialysis patients.
      (2004)
      ESCS22176.8%56.5 ± 14.933.868.8031.2
      Lindqvist
      • Lindqvist R.
      • Carlsson M.
      • Sjoden P.O.
      Coping strategies and health-related quality of life among spouses of continuous ambulatory peritoneal dialysis, haemodialysis, and transplant patients.
      (2000)
      SECS3557.1%FHD: 60.8 ± 15.1; PD: 62.7 ± 9.9NA57.1042.9
      Asti
      • Asti T.
      • Kara M.
      • Ipek G.
      • Erci B.
      The experiences of loneliness, depression, and social support of Turkish patients with continuous ambulatory peritoneal dialysis and their caregivers.
      (2006)
      TRCS6581.5%43.9 ± 8.52NA0%0%100%
      Avsar
      • Avsar U.
      • Avsar U.Z.
      • Cansever Z.
      • et al.
      Psychological and emotional status, and caregiver burden in caregivers of patients with peritoneal dialysis compared with caregivers of patients with renal transplantation.
      (2013)
      TRCS6045%♂: 47.39 ± 15.9; ♀: 36.74 ± 13.6NA0%0%100%
      Avsar
      • Avsar U.
      • Avsar U.Z.
      • Cansever Z.
      • et al.
      Caregiver burden, anxiety, depression, and sleep quality differences in caregivers of hemodialysis patients compared with renal transplant patients.
      (2015)
      TRCS6858.8%43.1 ± 8.5NA100%0%0%
      Cantekin
      • Cantekin I.
      • Kavurmaci M.
      • Tan M.
      An analysis of caregiver burden of patients with hemodialysis and peritoneal dialysis.
      (2016)
      TRCS114FHD: 31%; PD 34%FHD: 38.24 ± 12.3; PD: 36.64 ± 15.08NA47.4%0%52.6
      Celik
      • Celik G.
      • Annagur B.B.
      • Yilmaz M.
      • Demir T.
      • Kara F.
      Are sleep and life quality of family caregivers affected as much as those of hemodialysis patients?.
      (2012)
      TRCS14262%46.1 ± 10.9NA100%0%0%
      Mollaoglu
      • Mollaoglu M.
      • Kayatas M.
      • Yurugen B.
      Effects on caregiver burden of education related to home care in patients undergoing hemodialysis.
      (2013)
      TRLC12280.3%52.4 ± 8.99.84%0%27.972.1
      Sezer
      • Sezer M.T.
      • Eren I.
      • Ozcankaya R.
      • Civi I.
      • Erturk J.
      • Ozturk M.
      Psychological symptoms are greater in caregivers of patients on hemodialysis than those of peritoneal dialysis.
      (2003)
      TRCS6046.7%FHD: 50.9 ± 12.1; PD: 47.1 ± 12.5NA55%0%45%
      Sezer
      • Sezer S.
      • Uyar M.E.
      • Bal Z.
      • Tutal E.
      • Ozdemir Acar F.N.
      The influence of socioeconomic factors on depression in maintenance hemodialysis patients and their caregivers.
      (2013)
      TRCS40NANANA100%0%0%
      Yilmaz
      • Yilmaz A.
      • Kocak O.M.
      • Aygor B.
      • et al.
      Sexual functioning in hemodialysis patients and their spouses: results of a prospective study from Turkey.
      (2009)
      TRCS4568.9%45.2 ± 10.331.1%100%0%0%
      Daly
      • Daly R.J.
      • Hassall C.
      Reported sleep on maintenance haemodialysis.
      (1970)
      UKCS15NANANA0%100%
      Nocturnal HD.
      0%
      Fan
      • Fan S.L.
      • Sathick I.
      • McKitty K.
      • Punzalan S.
      Quality of life of caregivers and patients on peritoneal dialysis.
      (2008)
      UKLC36NANANA0%0%100%
      Brackney
      • Brackney B.
      The impact of hemodialysis on the marital dyad.
      (1979)
      USCS12100%NANA0%100%0%
      Byers
      • Byers D.J.
      • Mona N.W.
      • Beard T.H.
      Depressive symptoms and health promotion behaviors of African-American women who are family caregivers of hemodialysis recipients.
      (2011)
      USCS75100%NANA100%0%0%
      Courts
      • Courts N.F.
      Psychosocial adjustment of patients on home hemodialysis and their dialysis partners.
      (2000)
      USCS1492.9%47 [21]NA0%100%0%
      Daneker
      • Daneker B.
      • Kimmel P.L.
      • Ranich T.
      • Peterson R.A.
      Depression and marital dissatisfaction in patients with end-stage renal disease and in their spouses.
      (2001)
      USCS5576.4%51.9 ± 13.356.4%100%0%0%
      Dunn
      • Dunn S.A.
      • Lewis S.L.
      • Bonner P.N.
      • Meize-Grochowski R.
      Quality of life for spouses of CAPD patients.
      (1994)
      USCS38NA58.4 ± 14.5NA0%0%100%
      Finkelstein
      • Finkelstein F.O.
      • Finkelstein S.H.
      • Steele T.E.
      Assessment of marital relationships of hemodialysis patients.
      (1976)
      USCS1758.8%46 [17.5]88.2%58.8%41.2%0%
      Harris
      • Harris T.T.
      • Thomas C.M.
      • Wicks M.N.
      • Faulkner M.S.
      • Hathaway D.K.
      Subjective burden in young and older African-American caregivers of patients with end stage renal disease awaiting transplant.
      (2000)
      USCS7874.2%Younger group (n = 56): 39.7 ± 9.78; older group (n = 22): 64.45 ± 7.2370.23%NANANA
      Harris
      • Harris T.
      Burden and health in caregivers of persons with kidney disease.
      (2003)
      USCS12075.8%52.2 ± 15.951.7%94.2%0%5.8%
      Lowry
      • Lowry M.R.
      • Atcherson E.
      Spouse-assistants' adjustment to home hemodialysis.
      (1984)
      USLC2972.4%48 ± 1362.07%0%100%0%
      Page
      • Page S.
      • Weisberg M.B.
      Marital and family characteristics of home and hospital dialysis patients.
      (1991)
      USCS37NA42.18
      Mean (no SD available).
      35%NANANA
      Peterson
      • Peterson K.J.
      Psychosocial adjustment of the family caregiver: home hemodialysis as an example.
      (1985)
      USCS19100%49.6
      Mean (no SD available).
      57.9%100%0%0%
      Pruchno
      • Pruchno R.
      • Wilson-Genderson M.
      • Cartwright F.P.
      Depressive symptoms and marital satisfaction in the context of chronic disease: a longitudinal dyadic analysis.
      (2009)
      USLC31573%67.9 ± 9NA100%0%0%
      Schneider
      • Schneider R.
      The SF-36 and the MFI-20 in assessing fatigue among female caregivers of male hemodialysis patients.
      (2002)
      USCS45100%62 ± 13.8NA100%0%0%
      Schneider
      • Schneider R.A.
      Chronic renal failure: assessing the Fatigue Severity Scale for use among caregivers.
      (2004)
      USCS8081.2%62.6 ± 15.3NA100%0%0%
      Schoeneman
      • Schoeneman S.Z.
      • Reznikoff M.
      • Bacon S.J.
      Personality variables in coping with the stress of a spouse's chronic illness.
      (1983)
      USCS56100%52.2 ± 10.6NA100%0%0%
      Simone
      • Simone S.
      Multi-dimensional assessment of the effects of dialysis on the marital relationship.
      (1986)
      USCS15NA31.5 ± 6.4NANANANA
      Wicks
      • Wicks M.N.
      • Milstead E.J.
      • Hathaway D.K.
      • Cetingok M.
      Subjective burden and quality of life in family caregivers of patients with end stage renal disease.
      (1997)
      USCS7663.2%46.7 ± 11.467%76.3%2.6%21.1%
      Abbreviations: AU, Australia; BR, Brazil; CA, Canada; CN, China; CS, cross-sectional; ES, Spain; FHD, facility-based hemodialysis; FR, France; GR, Greece; HHD, home hemodialysis; IL, Israel; IN, India; IR, Iran; IT, Italy; JP, Japan; LC, longitudinal cohort; NA, not available; NL, Netherlands; PD, peritoneal dialysis; PK, Pakistan; PL, Poland; RCT, randomized controlled trial; SA, Saudi Arabia; SD, standard deviation; SE, Sweden; SG, Singapore; TR, Turkey; UK, United Kingdom; US, United States.
      a Values given as mean ± SD, median [interquartile range], or mean (range).
      b Mean (no SD available).
      c Nocturnal HD.
      Fifty-two studies were cross-sectional and 9 studies reporting 897 caregivers were longitudinal.
      • Hener T.
      • Weisenberg M.
      • Har-Even D.
      Supportive versus cognitive-behavioral intervention programs in achieving adjustment to home peritoneal kidney dialysis.
      • Lowry M.R.
      • Atcherson E.
      Spouse-assistants' adjustment to home hemodialysis.
      • Fan S.L.
      • Sathick I.
      • McKitty K.
      • Punzalan S.
      Quality of life of caregivers and patients on peritoneal dialysis.
      • Rahim A.
      • Alhani F.
      • Ahmadi F.
      • Gholyaf M.
      • Akhoond M.R.
      Effects of a continuous care model on perceived quality of life of spouses of haemodialysis patients.
      • Pruchno R.
      • Wilson-Genderson M.
      • Cartwright F.P.
      Depressive symptoms and marital satisfaction in the context of chronic disease: a longitudinal dyadic analysis.
      • Starzomski R.
      • Hilton A.
      Patient and family adjustment to kidney transplantation with and without an interim period of dialysis.
      • Mollaoglu M.
      • Kayatas M.
      • Yurugen B.
      Effects on caregiver burden of education related to home care in patients undergoing hemodialysis.
      • Kang A.
      • Yu Z.
      • Foo M.
      • et al.
      A longitudinal study of burden, quality of life and emotional distress in caregivers of peritoneal dialysis patients.
      • Suri R.S.
      • Larive B.
      • Hall Y.
      • et al.
      Effects of frequent hemodialysis on perceived caregiver burden in the Frequent Hemodialysis Network trials.
      Eight longitudinal studies were prospective cohort studies, with follow-up ranging from 3 months to 2 years.
      • Lowry M.R.
      • Atcherson E.
      Spouse-assistants' adjustment to home hemodialysis.
      • Fan S.L.
      • Sathick I.
      • McKitty K.
      • Punzalan S.
      Quality of life of caregivers and patients on peritoneal dialysis.
      • Rahim A.
      • Alhani F.
      • Ahmadi F.
      • Gholyaf M.
      • Akhoond M.R.
      Effects of a continuous care model on perceived quality of life of spouses of haemodialysis patients.
      • Pruchno R.
      • Wilson-Genderson M.
      • Cartwright F.P.
      Depressive symptoms and marital satisfaction in the context of chronic disease: a longitudinal dyadic analysis.
      • Starzomski R.
      • Hilton A.
      Patient and family adjustment to kidney transplantation with and without an interim period of dialysis.
      • Mollaoglu M.
      • Kayatas M.
      • Yurugen B.
      Effects on caregiver burden of education related to home care in patients undergoing hemodialysis.
      • Kang A.
      • Yu Z.
      • Foo M.
      • et al.
      A longitudinal study of burden, quality of life and emotional distress in caregivers of peritoneal dialysis patients.
      • Suri R.S.
      • Larive B.
      • Hall Y.
      • et al.
      Effects of frequent hemodialysis on perceived caregiver burden in the Frequent Hemodialysis Network trials.
      The remaining longitudinal study reported 60 caregivers included in a quasi-randomized controlled trial design.
      • Hener T.
      • Weisenberg M.
      • Har-Even D.
      Supportive versus cognitive-behavioral intervention programs in achieving adjustment to home peritoneal kidney dialysis.
      One of the cohort studies collected data pre- and posttransplantation for 67 caregivers.
      • Starzomski R.
      • Hilton A.
      Patient and family adjustment to kidney transplantation with and without an interim period of dialysis.
      Four studies reporting 221 caregivers collected data before and after an intervention for caregivers and/or patients.
      • Hener T.
      • Weisenberg M.
      • Har-Even D.
      Supportive versus cognitive-behavioral intervention programs in achieving adjustment to home peritoneal kidney dialysis.
      • Rahim A.
      • Alhani F.
      • Ahmadi F.
      • Gholyaf M.
      • Akhoond M.R.
      Effects of a continuous care model on perceived quality of life of spouses of haemodialysis patients.
      • Mollaoglu M.
      • Kayatas M.
      • Yurugen B.
      Effects on caregiver burden of education related to home care in patients undergoing hemodialysis.
      • Yu Z.L.
      • Seow Y.Y.
      • Seow P.S.
      • Tan B.L.
      Effectiveness of a day care program in supporting patients on peritoneal dialysis and their caregivers.
      The modified Newcastle-Ottawa Scale revealed that 85% of studies were at high risk of bias (Table S2). Only 3 studies enrolled more than 200 participants,
      • Alvarez-Ude F.
      • Valdes C.
      • Estebanez C.
      • Rebollo P.
      Health-related quality of life of family caregivers of dialysis patients.
      • Morelon E.
      • Berthoux F.
      • Brun-Strang C.
      • Fior S.
      • Volle R.
      Partners' concerns, needs and expectations in ESRD: results of the CODIT Study.
      • Pruchno R.
      • Wilson-Genderson M.
      • Cartwright F.P.
      Depressive symptoms and marital satisfaction in the context of chronic disease: a longitudinal dyadic analysis.
      whereas 2 studies had more than 200 participants but included data previously reported.
      • Belasco A.
      • Barbosa D.
      • Bettencourt A.R.
      • Diccini S.
      • Sesso R.
      Quality of life of family caregivers of elderly patients on hemodialysis and peritoneal dialysis.
      • Suri R.S.
      • Larive B.
      • Hall Y.
      • et al.
      Effects of frequent hemodialysis on perceived caregiver burden in the Frequent Hemodialysis Network trials.
      There were frequent methodological flaws in sample representativeness, comparability between respondents and nonrespondents, and poor-quality descriptive statistics. Twenty-seven studies used infrequently used measurement scales, as defined in Item S2.

      Study Settings

      The 61 studies included 5,367 caregivers from 21 countries (Fig 2), most commonly the United States (22% of caregivers, 17 studies) and a single French study (18.4% of caregivers).
      • Morelon E.
      • Berthoux F.
      • Brun-Strang C.
      • Fior S.
      • Volle R.
      Partners' concerns, needs and expectations in ESRD: results of the CODIT Study.
      Thirty-three studies included multiple centers, and only 1 study was multinational in design.
      • Suri R.S.
      • Larive B.
      • Hall Y.
      • et al.
      Effects of frequent hemodialysis on perceived caregiver burden in the Frequent Hemodialysis Network trials.
      Figure thumbnail gr2
      Figure 2Number of caregivers and studies according to countries (size of bubble in graph represents number of studies). Abbreviations: AUS, Australia; BRA, Brazil; CAN, Canada; CHN, China; ESP, Spain; FRA, France; GBR, Great Britain; GRC, Greece; IND, India; IRN, Iran; ISR, Israel; ITA, Italy; JPN, Japan; NLD, Netherlands; PAK, Pakistan; POL, Poland; SAU, Saudi Arabia; SGP, Singapore; SWE, Sweden; TUR, Turkey; USA, United States of America.

      Caregiver Definition

      Few studies provided a definition of a caregiver. When reported, definitions were not comparable and included “the person mainly responsible for looking after the patient during the course of the disease and most closely involved in caring for the patient” as identified by the patient,
      • Belasco A.G.
      • Sesso R.
      Burden and quality of life of caregivers for hemodialysis patients.
      “family member caregiver,”
      • Celik G.
      • Annagur B.B.
      • Yilmaz M.
      • Demir T.
      • Kara F.
      Are sleep and life quality of family caregivers affected as much as those of hemodialysis patients?.
      “dialysis partner,”
      • Courts N.F.
      Psychosocial adjustment of patients on home hemodialysis and their dialysis partners.
      the “person who principally cared for the patient outside the hospital, regardless of family relationship,”
      • Sezer M.T.
      • Eren I.
      • Ozcankaya R.
      • Civi I.
      • Erturk J.
      • Ozturk M.
      Psychological symptoms are greater in caregivers of patients on hemodialysis than those of peritoneal dialysis.
      “the person they could depend on to assist them if they could no longer care for themselves” as identified by the patient,
      • Harris T.T.
      • Thomas C.M.
      • Wicks M.N.
      • Faulkner M.S.
      • Hathaway D.K.
      Subjective burden in young and older African-American caregivers of patients with end stage renal disease awaiting transplant.
      “a key member of the care-providing team who is expected to be an ever-present source of psychological as well as material support,”
      • Morelon E.
      • Berthoux F.
      • Brun-Strang C.
      • Fior S.
      • Volle R.
      Partners' concerns, needs and expectations in ESRD: results of the CODIT Study.
      “dialysis helper,”
      • Peterson K.J.
      Psychosocial adjustment of the family caregiver: home hemodialysis as an example.
      and an individual who played “a significant role in the dialysis process and in caring for the patient.”
      • Piira T.
      • Chow J.
      • Suranyi M.
      The role of cognitive factors in the adjustment of home dialysis carers.

      Caregiver Demographics

      Table 1 summarizes clinical and demographic characteristics in all 61 studies. Study sample size ranged from 3 to 988 caregivers. The mean age of caregivers ranged from 31.5 to 67.9 years. When reported, the majority of caregivers were female (70.8%; range, 31%-100%). Education level was reported in 26 studies with 1,766 participants, with 15.6% (range, 11.1%-63.1%) reaching tertiary-level education and 12.6% (range, 1.4%-50.8%) illiterate. Employment status was reported in 23 studies with 2,754 participants, with 34.5% (range, 9.8%-88.3%) employed in an occupation outside of their caregiving role. Only 7 studies (13.9% of total participants) reported the mean hours of caregiving, which ranged from 26 to 69 hours per week.

      Dialysis Modality

      Fifty-seven studies reported dialysis modality in 5,166 (96.3%) patients. Of these, 3,734 (72.3%) were managed with facility HD; 1,066 (20.6%), with PD; and 366 (7.1%), with home HD. Table 2 shows caregivers’ age, sex, and relationship to patient by dialysis modality.
      Table 2Demographic Data for Caregivers and Patients According to Dialysis Modality
      Demographic CharacteristicFacility-Based HemodialysisHome HemodialysisPeritoneal Dialysis
      Range of mean patient age, y43.7-74.2 (n = 1,859)47.1-52.5 (n = 146)44.7-72.1 (n = 463)
      Range of mean caregiver age, y38.2-67.9 (n = 2,891)47.3-55.0 (n = 224)36.6-62.7 (n = 721)
      Female sex of caregiver71.4%; range, 43.3%-100% (n = 3,147)72.3%; range, 26.7%-100% (n = 155)66.1%; range, 45.0%-81.5% (n = 649)
      Spousal patient-caregiver relationship90.4%; range, 49%-100% (n = 2,425)92.8%; range, 60%-100% (n = 222)77.1%; range, 31.5%-100% (n = 580)

      Measurement Scales

      A total of 70 different quantitative measurement scales were used to assess QoL and caregiver burden (Table S3). The most frequently used scales were the Zarit Burden Interview (ZBI; 1,316 caregivers in 13 studies), the Medical Outcomes Study 36-Item Short Form Survey (SF-36; 835 caregivers in 8 studies), the Center for Epidemiologic Studies Depression Scale (CES-D; 781 caregivers in 7 studies), and the Beck Depression Inventory (BDI; 606 caregivers in 9 studies). Figure 3 shows numbers of caregivers assessed using the most commonly used measurement scales.
      Figure thumbnail gr3
      Figure 3Caregiver numbers assessed by measurement scales in 3 or more studies and 100 or more caregivers. Abbreviations: BDI, Beck Depression Inventory; BSI, Brief Symptom Inventory; CBS, Caregiver Burden Scale; CES-D, Center for Epidemiologic Studies Depression Scale; DAS, Dyadic Adjustment Scale; HADS, Hospital Anxiety and Depression Scale; JCS, Jaloweic Coping Scale; PAIS, Psychosocial Adjustment to Illness Scale; PSQI, Pittsburgh Sleep Quality Index; SF-36, Medical Outcomes Study 36-Item Short Form Study; ZBI, Zarit Burden Interview.
      The 70 measurement scales used in the studies can be categorized into outcome domains (Table S4). The most frequently studied domain was mental health, including depression, anxiety, and psychological distress.

      QoL/Burden Data

      When compared with population norms for the SF-36 and accepted thresholds for the ZBI, CES-D, and BDI, caregivers generally experience significant burden and have poorer QoL, but rates of depression are not elevated (Fig 4). However, studies that reported only categorical results (not included in Fig 4) found depression rates of 34.7% to 55% among caregivers.
      • Byers D.J.
      • Mona N.W.
      • Beard T.H.
      Depressive symptoms and health promotion behaviors of African-American women who are family caregivers of hemodialysis recipients.
      • Harris T.T.
      • Thomas C.M.
      • Wicks M.N.
      • Faulkner M.S.
      • Hathaway D.K.
      Subjective burden in young and older African-American caregivers of patients with end stage renal disease awaiting transplant.
      • Matsuu K.
      • Washio M.
      • Arai Y.
      • et al.
      Depression among caregivers of elderly patients on chronic hemodialysis.
      • Sezer M.T.
      • Eren I.
      • Ozcankaya R.
      • Civi I.
      • Erturk J.
      • Ozturk M.
      Psychological symptoms are greater in caregivers of patients on hemodialysis than those of peritoneal dialysis.
      Less frequently used scales reported significant impairment of QoL.
      • Lindqvist R.
      • Carlsson M.
      • Sjoden P.O.
      Coping strategies and health-related quality of life among spouses of continuous ambulatory peritoneal dialysis, haemodialysis, and transplant patients.
      • Morelon E.
      • Berthoux F.
      • Brun-Strang C.
      • Fior S.
      • Volle R.
      Partners' concerns, needs and expectations in ESRD: results of the CODIT Study.
      • Kang A.
      • Yu Z.
      • Foo M.
      • et al.
      A longitudinal study of burden, quality of life and emotional distress in caregivers of peritoneal dialysis patients.
      Dyadic adjustment scale scores
      • Dunn S.A.
      • Lewis S.L.
      • Bonner P.N.
      • Meize-Grochowski R.
      Quality of life for spouses of CAPD patients.
      • Daneker B.
      • Kimmel P.L.
      • Ranich T.
      • Peterson R.A.
      Depression and marital dissatisfaction in patients with end-stage renal disease and in their spouses.
      • Khaira A.
      • Mahajan S.
      • Khatri P.
      • Bhowmik D.
      • Gupta S.
      • Agarwal S.K.
      Depression and marital dissatisfaction among Indian hemodialysis patients and their spouses: a cross-sectional study.
      • Pruchno R.
      • Wilson-Genderson M.
      • Cartwright F.P.
      Depressive symptoms and marital satisfaction in the context of chronic disease: a longitudinal dyadic analysis.
      were consistent with poor marital adjustment, although there were no data for divorce rates. One study reported higher rates of marital dissatisfaction and distress among caregivers than in a control population.
      • Simone S.
      Multi-dimensional assessment of the effects of dialysis on the marital relationship.
      Pittsburgh Sleep Quality Index scores
      • Celik G.
      • Annagur B.B.
      • Yilmaz M.
      • Demir T.
      • Kara F.
      Are sleep and life quality of family caregivers affected as much as those of hemodialysis patients?.
      • Avsar U.
      • Avsar U.Z.
      • Cansever Z.
      • et al.
      Psychological and emotional status, and caregiver burden in caregivers of patients with peritoneal dialysis compared with caregivers of patients with renal transplantation.
      reflected poor sleep.
      Figure thumbnail gr4
      Figure 4Burden, quality of life, and depression in caregivers of dialysis patients compared with population norm or threshold using the: (A) Zarit Burden Interview (ZBI), (B) Medical Outcomes Study 36-Item Short Form Survey (SF-36), (C) Center for Epidemiologic Studies Depression Scale (CES-D), and (D) Beck Depression Inventory (BDI).
      Longitudinal studies had varied outcomes, with one showing no change in QoL over time
      • Fan S.L.
      • Sathick I.
      • McKitty K.
      • Punzalan S.
      Quality of life of caregivers and patients on peritoneal dialysis.
      while others showed a decline in psychosocial adjustment,
      • Hener T.
      • Weisenberg M.
      • Har-Even D.
      Supportive versus cognitive-behavioral intervention programs in achieving adjustment to home peritoneal kidney dialysis.
      increasing burden,
      • Kang A.
      • Yu Z.
      • Foo M.
      • et al.
      A longitudinal study of burden, quality of life and emotional distress in caregivers of peritoneal dialysis patients.
      • Suri R.S.
      • Larive B.
      • Hall Y.
      • et al.
      Effects of frequent hemodialysis on perceived caregiver burden in the Frequent Hemodialysis Network trials.
      poorer marital adjustment,
      • Pruchno R.
      • Wilson-Genderson M.
      • Cartwright F.P.
      Depressive symptoms and marital satisfaction in the context of chronic disease: a longitudinal dyadic analysis.
      and worsening QoL.
      • Kang A.
      • Yu Z.
      • Foo M.
      • et al.
      A longitudinal study of burden, quality of life and emotional distress in caregivers of peritoneal dialysis patients.

      Caregivers’ QoL Compared With a Control Group or General Population

      Thirteen studies compared caregiver results with a control group or general population norms. Three of the studies used the SF-36 and showed poorer QoL in caregivers when compared with a control group or the country norm.
      • Lindqvist R.
      • Carlsson M.
      • Sjoden P.O.
      Coping strategies and health-related quality of life among spouses of continuous ambulatory peritoneal dialysis, haemodialysis, and transplant patients.
      • Schneider R.
      The SF-36 and the MFI-20 in assessing fatigue among female caregivers of male hemodialysis patients.
      • Shimoyama S.
      • Hirakawa O.
      • Yahiro K.
      • Mizumachi T.
      • Schreiner A.
      • Kakuma T.
      Health-related quality of life and caregiver burden among peritoneal dialysis patients and their family caregivers in Japan.
      The remaining studies used various measurement scales yielding results of either similar or poorer QoL,
      • Kang A.
      • Yu Z.
      • Foo M.
      • et al.
      A longitudinal study of burden, quality of life and emotional distress in caregivers of peritoneal dialysis patients.
      similar or higher rates of depression,
      • Finkelstein F.O.
      • Finkelstein S.H.
      • Steele T.E.
      Assessment of marital relationships of hemodialysis patients.
      • Matsuu K.
      • Washio M.
      • Arai Y.
      • et al.
      Depression among caregivers of elderly patients on chronic hemodialysis.
      • Sezer M.T.
      • Eren I.
      • Ozcankaya R.
      • Civi I.
      • Erturk J.
      • Ozturk M.
      Psychological symptoms are greater in caregivers of patients on hemodialysis than those of peritoneal dialysis.
      greater anxiety,
      • Ferrario S.R.
      • Zotti A.M.
      • Baroni A.
      • Cavagnino A.
      • Fornara R.
      Emotional reactions and practical problems of the caregivers of hemodialysed patients.
      poorer adjustment,
      • Simone S.
      Multi-dimensional assessment of the effects of dialysis on the marital relationship.
      • Hener T.
      • Weisenberg M.
      • Har-Even D.
      Supportive versus cognitive-behavioral intervention programs in achieving adjustment to home peritoneal kidney dialysis.
      • Jiang H.
      • Wang L.
      • Zhang Q.
      • et al.
      Family functioning, marital satisfaction and social support in hemodialysis patients and their spouses.
      and higher rates of stress
      • Soskolne V.
      The effect of ethnic origin on personality resources and psychophysiological health in a chronic stress situation: the case of spouses of dialysis patients.
      • Hener T.
      • Weisenberg M.
      • Har-Even D.
      Supportive versus cognitive-behavioral intervention programs in achieving adjustment to home peritoneal kidney dialysis.
      • Starzomski R.
      • Hilton A.
      Patient and family adjustment to kidney transplantation with and without an interim period of dialysis.
      • Jiang H.
      • Wang L.
      • Zhang Q.
      • et al.
      Family functioning, marital satisfaction and social support in hemodialysis patients and their spouses.
      in caregivers compared with either a control group or the broader community norm.

      Caregiver Compared With Dialysis Patient QoL

      Twenty-five studies compared caregiver QoL with that of dialysis patients. Figure 5 shows forest plots (using the DerSimonian-Laird approach) comparing caregivers with the dialysis patients they care for as measured with the BDI and SF-36 physical and mental component score. Comparable results were found in the sensitivity analysis using the method of residual maximum likelihood. Nine studies suggested that caregivers were less depressed and had better QoL than the dialysis patients.
      • Asti T.
      • Kara M.
      • Ipek G.
      • Erci B.
      The experiences of loneliness, depression, and social support of Turkish patients with continuous ambulatory peritoneal dialysis and their caregivers.
      • Belasco A.
      • Barbosa D.
      • Bettencourt A.R.
      • Diccini S.
      • Sesso R.
      Quality of life of family caregivers of elderly patients on hemodialysis and peritoneal dialysis.
      • Belasco A.G.
      • Sesso R.
      Burden and quality of life of caregivers for hemodialysis patients.
      • Celik G.
      • Annagur B.B.
      • Yilmaz M.
      • Demir T.
      • Kara F.
      Are sleep and life quality of family caregivers affected as much as those of hemodialysis patients?.
      • Daneker B.
      • Kimmel P.L.
      • Ranich T.
      • Peterson R.A.
      Depression and marital dissatisfaction in patients with end-stage renal disease and in their spouses.
      • Fan S.L.
      • Sathick I.
      • McKitty K.
      • Punzalan S.
      Quality of life of caregivers and patients on peritoneal dialysis.
      • Khaira A.
      • Mahajan S.
      • Khatri P.
      • Bhowmik D.
      • Gupta S.
      • Agarwal S.K.
      Depression and marital dissatisfaction among Indian hemodialysis patients and their spouses: a cross-sectional study.
      • Rioux J.P.
      • Narayanan R.
      • Chan C.T.
      Caregiver burden among nocturnal home hemodialysis patients.
      • Saeed Z.
      • Ahmad A.M.
      • Shakoor A.
      • Ghafoor F.
      • Kanwal S.
      Depression in patients on hemodialysis and their caregivers.
      The remaining studies used various measurement scales showing either similar or better QoL or less depression in caregivers compared with patients.
      • Dunn S.A.
      • Lewis S.L.
      • Bonner P.N.
      • Meize-Grochowski R.
      Quality of life for spouses of CAPD patients.
      • Finkelstein F.O.
      • Finkelstein S.H.
      • Steele T.E.
      Assessment of marital relationships of hemodialysis patients.
      • Page S.
      • Weisberg M.B.
      Marital and family characteristics of home and hospital dialysis patients.
      • Rideout E.M.
      • Rodin G.M.
      • Littlefield C.H.
      Stress, social support, and symptoms of depression in spouses of the medically ill.
      • Soskolne V.
      • Kaplan De-Nour A.
      The psychosocial adjustment of patients and spouses to dialysis treatment.
      • Daly R.J.
      • Hassall C.
      Reported sleep on maintenance haemodialysis.
      • Lowry M.R.
      • Atcherson E.
      Spouse-assistants' adjustment to home hemodialysis.
      • Anees M.
      • Hameed F.
      • Mumtaz A.
      • Ibrahim M.
      • Saeed Khan M.N.
      Dialysis-related factors affecting quality of life in patients on hemodialysis.
      • Courts N.F.
      Psychosocial adjustment of patients on home hemodialysis and their dialysis partners.
      • Ferrario S.R.
      • Zotti A.M.
      • Baroni A.
      • Cavagnino A.
      • Fornara R.
      Emotional reactions and practical problems of the caregivers of hemodialysed patients.
      • Shimoyama S.
      • Hirakawa O.
      • Yahiro K.
      • Mizumachi T.
      • Schreiner A.
      • Kakuma T.
      Health-related quality of life and caregiver burden among peritoneal dialysis patients and their family caregivers in Japan.
      • Yilmaz A.
      • Kocak O.M.
      • Aygor B.
      • et al.
      Sexual functioning in hemodialysis patients and their spouses: results of a prospective study from Turkey.
      • Pruchno R.
      • Wilson-Genderson M.
      • Cartwright F.P.
      Depressive symptoms and marital satisfaction in the context of chronic disease: a longitudinal dyadic analysis.
      • Starzomski R.
      • Hilton A.
      Patient and family adjustment to kidney transplantation with and without an interim period of dialysis.
      • Sezer S.
      • Uyar M.E.
      • Bal Z.
      • Tutal E.
      • Ozdemir Acar F.N.
      The influence of socioeconomic factors on depression in maintenance hemodialysis patients and their caregivers.
      • Jiang H.
      • Wang L.
      • Zhang Q.
      • et al.
      Family functioning, marital satisfaction and social support in hemodialysis patients and their spouses.
      A single study reported sleep duration and quality as inferior to that of patients in a group of 142 caregivers of facility HD patients.
      • Celik G.
      • Annagur B.B.
      • Yilmaz M.
      • Demir T.
      • Kara F.
      Are sleep and life quality of family caregivers affected as much as those of hemodialysis patients?.
      Figure thumbnail gr5
      Figure 5Forest plot comparison of depression and quality of life between caregivers of dialysis patients versus dialysis patients using the: (A) Beck Depression Inventory, (B) Medical Outcomes Study 36-Item Short Form Survey physical component score, and (C) Medical Outcomes Study 36-Item Short Form Survey mental component score. Abbreviations: CI, confidence interval; SD, standard deviation.

      Impact of Dialysis Modality on Caregivers

      Seventeen studies reported data for caregivers of patients from more than 1 dialysis modality,
      • Finkelstein F.O.
      • Finkelstein S.H.
      • Steele T.E.
      Assessment of marital relationships of hemodialysis patients.
      • Rideout E.M.
      • Rodin G.M.
      • Littlefield C.H.
      Stress, social support, and symptoms of depression in spouses of the medically ill.
      • Soskolne V.
      • De-Nour A.K.
      Psychosocial adjustment of home hemodialysis, continuous ambulatory peritoneal dialysis and hospital dialysis patients and their spouses.
      • Wicks M.N.
      • Milstead E.J.
      • Hathaway D.K.
      • Cetingok M.
      Subjective burden and quality of life in family caregivers of patients with end stage renal disease.
      • Alvarez-Ude F.
      • Valdes C.
      • Estebanez C.
      • Rebollo P.
      Health-related quality of life of family caregivers of dialysis patients.
      • Belasco A.
      • Barbosa D.
      • Bettencourt A.R.
      • Diccini S.
      • Sesso R.
      Quality of life of family caregivers of elderly patients on hemodialysis and peritoneal dialysis.
      • Harris T.
      Burden and health in caregivers of persons with kidney disease.
      • Klak R.
      • Rymaszewska J.
      • Watorek E.
      • et al.
      Exhaustion of caregivers of patients on maintenance haemodialysis [letter to the editor].
      • Lindqvist R.
      • Carlsson M.
      • Sjoden P.O.
      Coping strategies and health-related quality of life among spouses of continuous ambulatory peritoneal dialysis, haemodialysis, and transplant patients.
      • Piira T.
      • Chow J.
      • Suranyi M.
      The role of cognitive factors in the adjustment of home dialysis carers.
      • Sezer M.T.
      • Eren I.
      • Ozcankaya R.
      • Civi I.
      • Erturk J.
      • Ozturk M.
      Psychological symptoms are greater in caregivers of patients on hemodialysis than those of peritoneal dialysis.
      • Starzomski R.
      • Hilton A.
      Patient and family adjustment to kidney transplantation with and without an interim period of dialysis.
      • Mollaoglu M.
      • Kayatas M.
      • Yurugen B.
      Effects on caregiver burden of education related to home care in patients undergoing hemodialysis.
      • Parlevliet J.L.
      • Buurman B.M.
      • Pannekeet M.M.
      • et al.
      Systematic comprehensive geriatric assessment in elderly patients on chronic dialysis: a cross-sectional comparative and feasibility study.
      • Suri R.S.
      • Larive B.
      • Hall Y.
      • et al.
      Effects of frequent hemodialysis on perceived caregiver burden in the Frequent Hemodialysis Network trials.
      • Cantekin I.
      • Kavurmaci M.
      • Tan M.
      An analysis of caregiver burden of patients with hemodialysis and peritoneal dialysis.
      • Al Wakeel J.S.
      • Bayoumi M.M.
      Caregiver burden among peritoneal dialysis and hemodialysis family in Saudi Arabia.
      of which most only reported combined results, making comparison impossible.
      • Finkelstein F.O.
      • Finkelstein S.H.
      • Steele T.E.
      Assessment of marital relationships of hemodialysis patients.
      • Rideout E.M.
      • Rodin G.M.
      • Littlefield C.H.
      Stress, social support, and symptoms of depression in spouses of the medically ill.
      • Wicks M.N.
      • Milstead E.J.
      • Hathaway D.K.
      • Cetingok M.
      Subjective burden and quality of life in family caregivers of patients with end stage renal disease.
      • Harris T.
      Burden and health in caregivers of persons with kidney disease.
      • Klak R.
      • Rymaszewska J.
      • Watorek E.
      • et al.
      Exhaustion of caregivers of patients on maintenance haemodialysis [letter to the editor].
      • Lindqvist R.
      • Carlsson M.
      • Sjoden P.O.
      Coping strategies and health-related quality of life among spouses of continuous ambulatory peritoneal dialysis, haemodialysis, and transplant patients.
      • Piira T.
      • Chow J.
      • Suranyi M.
      The role of cognitive factors in the adjustment of home dialysis carers.
      • Starzomski R.
      • Hilton A.
      Patient and family adjustment to kidney transplantation with and without an interim period of dialysis.
      • Mollaoglu M.
      • Kayatas M.
      • Yurugen B.
      Effects on caregiver burden of education related to home care in patients undergoing hemodialysis.
      • Parlevliet J.L.
      • Buurman B.M.
      • Pannekeet M.M.
      • et al.
      Systematic comprehensive geriatric assessment in elderly patients on chronic dialysis: a cross-sectional comparative and feasibility study.
      Two studies reported on the ZBI and found no difference in caregiver burden between HD or PD. The SF-36 was reported by 2 studies,
      • Alvarez-Ude F.
      • Valdes C.
      • Estebanez C.
      • Rebollo P.
      Health-related quality of life of family caregivers of dialysis patients.
      • Belasco A.
      • Barbosa D.
      • Bettencourt A.R.
      • Diccini S.
      • Sesso R.
      Quality of life of family caregivers of elderly patients on hemodialysis and peritoneal dialysis.
      with no difference found between HD and PD caregivers for physical component score. The mental component score was worse for PD caregivers in the smaller study,
      • Belasco A.
      • Barbosa D.
      • Bettencourt A.R.
      • Diccini S.
      • Sesso R.
      Quality of life of family caregivers of elderly patients on hemodialysis and peritoneal dialysis.
      but comparable in the larger study.
      • Alvarez-Ude F.
      • Valdes C.
      • Estebanez C.
      • Rebollo P.
      Health-related quality of life of family caregivers of dialysis patients.
      A small study from Turkey reported greater somatization and depression among caregivers of facility HD compared with PD patients.
      • Sezer M.T.
      • Eren I.
      • Ozcankaya R.
      • Civi I.
      • Erturk J.
      • Ozturk M.
      Psychological symptoms are greater in caregivers of patients on hemodialysis than those of peritoneal dialysis.
      The burden on caregivers of assisted PD patients compared with self-care PD patients in Singapore has been reported as equivalent.
      • Griva K.
      • Goh C.S.
      • Kang W.C.
      • et al.
      Quality of life and emotional distress in patients and burden in caregivers: a comparison between assisted peritoneal dialysis and self-care peritoneal dialysis.
      The Frequent Hemodialysis Network (FHN) Study showed no difference for caregivers of frequent in-center HD patients, but a nominally increased burden for caregivers of home nocturnal HD when compared with caregivers of standard facility HD patients, although this difference was not statistically significant.
      • Suri R.S.
      • Larive B.
      • Hall Y.
      • et al.
      Effects of frequent hemodialysis on perceived caregiver burden in the Frequent Hemodialysis Network trials.
      However, a study of caregivers of nocturnal home HD patients reported a low BDI score of 4.1 ± 5.7 (75% of caregivers had no depression), but there was no comparator group.
      • Rioux J.P.
      • Narayanan R.
      • Chan C.T.
      Caregiver burden among nocturnal home hemodialysis patients.

      Dialysis Caregivers Compared With Other Caregivers

      Seven studies compared QoL of dialysis caregivers with that of other caregivers.
      • Wicks M.N.
      • Milstead E.J.
      • Hathaway D.K.
      • Cetingok M.
      Subjective burden and quality of life in family caregivers of patients with end stage renal disease.
      • Lindqvist R.
      • Carlsson M.
      • Sjoden P.O.
      Coping strategies and health-related quality of life among spouses of continuous ambulatory peritoneal dialysis, haemodialysis, and transplant patients.
      • Matsuu K.
      • Washio M.
      • Arai Y.
      • et al.
      Depression among caregivers of elderly patients on chronic hemodialysis.
      • Morelon E.
      • Berthoux F.
      • Brun-Strang C.
      • Fior S.
      • Volle R.
      Partners' concerns, needs and expectations in ESRD: results of the CODIT Study.
      • Avsar U.
      • Avsar U.Z.
      • Cansever Z.
      • et al.
      Psychological and emotional status, and caregiver burden in caregivers of patients with peritoneal dialysis compared with caregivers of patients with renal transplantation.
      • Parlevliet J.L.
      • Buurman B.M.
      • Pannekeet M.M.
      • et al.
      Systematic comprehensive geriatric assessment in elderly patients on chronic dialysis: a cross-sectional comparative and feasibility study.
      • Avsar U.
      • Avsar U.Z.
      • Cansever Z.
      • et al.
      Caregiver burden, anxiety, depression, and sleep quality differences in caregivers of hemodialysis patients compared with renal transplant patients.
      Four studies showed poorer outcomes for dialysis caregivers compared with caregivers of renal transplant recipients.
      • Lindqvist R.
      • Carlsson M.
      • Sjoden P.O.
      Coping strategies and health-related quality of life among spouses of continuous ambulatory peritoneal dialysis, haemodialysis, and transplant patients.
      • Morelon E.
      • Berthoux F.
      • Brun-Strang C.
      • Fior S.
      • Volle R.
      Partners' concerns, needs and expectations in ESRD: results of the CODIT Study.
      • Avsar U.
      • Avsar U.Z.
      • Cansever Z.
      • et al.
      Psychological and emotional status, and caregiver burden in caregivers of patients with peritoneal dialysis compared with caregivers of patients with renal transplantation.
      • Avsar U.
      • Avsar U.Z.
      • Cansever Z.
      • et al.
      Caregiver burden, anxiety, depression, and sleep quality differences in caregivers of hemodialysis patients compared with renal transplant patients.
      However, transplant recipient caregivers were younger than dialysis caregivers
      • Lindqvist R.
      • Carlsson M.
      • Sjoden P.O.
      Coping strategies and health-related quality of life among spouses of continuous ambulatory peritoneal dialysis, haemodialysis, and transplant patients.
      or the patients cared for were not described,
      • Avsar U.
      • Avsar U.Z.
      • Cansever Z.
      • et al.
      Psychological and emotional status, and caregiver burden in caregivers of patients with peritoneal dialysis compared with caregivers of patients with renal transplantation.
      • Avsar U.
      • Avsar U.Z.
      • Cansever Z.
      • et al.
      Caregiver burden, anxiety, depression, and sleep quality differences in caregivers of hemodialysis patients compared with renal transplant patients.
      leading to probable bias. A large French study reported better QoL for caregivers of transplant recipients compared with caregivers of dialysis patients awaiting transplantation.
      • Morelon E.
      • Berthoux F.
      • Brun-Strang C.
      • Fior S.
      • Volle R.
      Partners' concerns, needs and expectations in ESRD: results of the CODIT Study.
      One study showed no difference in 76 dialysis caregivers’ QoL compared with caregivers of non–dialysis-dependent patients with chronic kidney disease, although the authors suggested possible sampling bias.
      • Wicks M.N.
      • Milstead E.J.
      • Hathaway D.K.
      • Cetingok M.
      Subjective burden and quality of life in family caregivers of patients with end stage renal disease.
      Other studies showed no difference in rates of depression in dialysis caregivers compared with caregivers of the frail elderly,
      • Matsuu K.
      • Washio M.
      • Arai Y.
      • et al.
      Depression among caregivers of elderly patients on chronic hemodialysis.
      but increased burden compared with caregivers of oncology patients.
      • Parlevliet J.L.
      • Buurman B.M.
      • Pannekeet M.M.
      • et al.
      Systematic comprehensive geriatric assessment in elderly patients on chronic dialysis: a cross-sectional comparative and feasibility study.

      Discussion

      This systematic review has found that caregiver QoL and burden is worse than in the general population and comparable to caregivers of patients with other chronic diseases. Depression is less common than among the cared for dialysis patients and comparable or slightly greater than for the general population. Furthermore, the impact on caregiving for facility HD patients is similar to that of PD patients. QoL is better for caregivers of transplant recipients than dialysis patients.
      Despite the breadth of research to date investigating the QoL and burden of dialysis caregivers, a systematic review of the literature is difficult due to the heterogeneity of studies. We found a total of 70 quantitative measurement scales used to assess caregivers across 61 studies, suggesting no consensus among researchers regarding which scales are ideal. Some scales were adapted to suit the study setting or sample, potentially affecting their validity.
      • Belasco A.G.
      • Sesso R.
      Burden and quality of life of caregivers for hemodialysis patients.
      • Celik G.
      • Annagur B.B.
      • Yilmaz M.
      • Demir T.
      • Kara F.
      Are sleep and life quality of family caregivers affected as much as those of hemodialysis patients?.
      • Mollaoglu M.
      • Kayatas M.
      • Yurugen B.
      Effects on caregiver burden of education related to home care in patients undergoing hemodialysis.
      Furthermore, caregivers have been studied from various countries and cultures, and it is possible that some scales were not validated in these populations. Numerous studies used multiple scales to measure impact on caregivers, further suggesting a lack of consensus regarding the ideal scales to use. Although the most commonly used scales were the SF-36, ZBI, CES-D, and BDI, recommending a preferred measurement scale is difficult. A preferred scale would be simple, brief, and validated across countries and languages and allow comparison with other caregiver and general populations. It is also important that it detects some of the unique issues of caregivers of patients on different dialysis modalities. We suggest a role for qualitative studies and an approach such as used by the SONG (Standardized Outcomes in Nephrology) HD initiative
      • Tong A.
      • Manns B.
      • Hemmelgarn B.
      • et al.
      Establishing core outcome domains in hemodialysis: report of the Standardized Outcomes in Nephrology-Hemodialysis (SONG-HD) Consensus Workshop.
      to determine and possibly develop the best scales.
      Overall, this review suggests that QoL of caregivers of dialysis patients may not be as poor as some qualitative research suggests.
      • Atcherson E.
      The quality of life: a study of hemodialysis patients.
      • Beanlands H.
      • Horsburgh M.E.
      • Fox S.
      • et al.
      Caregiving by family and friends of adults receiving dialysis.
      • Brunier G.M.
      • McKeever P.T.
      The impact of home dialysis on the family: literature review.
      However, the scales used may not assess QoL, human emotion, mental state, and relationships, as well as qualitative research. Furthermore, the included studies often do not report the severity of illness of the dialysis patients and the associated caregiving demands.
      QoL of dialysis patients undertaking home HD and PD has been reported to be comparable or better
      • Derrett S.
      • Samaranayaka A.
      • Schollum J.B.W.
      • et al.
      Predictors of health deterioration among older adults after 12 months of dialysis therapy: a longitudinal cohort study from New Zealand.
      • Wyld M.
      • Morton R.L.
      • Hayen A.
      • Howard K.
      • Webster A.C.
      A systematic review and meta-analysis of utility-based quality of life in chronic kidney disease treatments.
      than for patients undertaking facility HD.
      • Wasserfallen J.B.
      • Halabi G.
      • Saudan P.
      • et al.
      Quality of life on chronic dialysis: comparison between haemodialysis and peritoneal dialysis.
      This review has found that the burden and QoL of caregivers is comparable between HD and PD. This finding may be confounded by self-selection of people undertaking home dialysis who tend to be younger and may need less caregiver support. Furthermore, the number of caregivers of home HD patients studied is relatively small. Further work is needed to adjust for differences in patient profiles of home dialysis therapies (especially home HD) and facility HD and the assistance they require from caregivers to allow valid comparison.
      Secondary outcome data of this systematic review served to build the profile of a dialysis caregiver. This group is dominated by female spouses of often older male patients. Although female sex and younger age are thought to be risk factors for higher levels of burden, the spousal relationship may be protective.
      • Mollaoglu M.
      • Kayatas M.
      • Yurugen B.
      Effects on caregiver burden of education related to home care in patients undergoing hemodialysis.
      A lower education level is also protective, but a significant rate of illiteracy in this systematic review was surprising given the importance and complexity of the caregiving role in maintenance dialysis. When reported, one-third of caregivers were employed, but results from included studies did not allow for comparison of QoL between employed and unemployed caregivers. One study suggests that employment outside the caregiving role may be protective against depression.
      • Saeed Z.
      • Ahmad A.M.
      • Shakoor A.
      • Ghafoor F.
      • Kanwal S.
      Depression in patients on hemodialysis and their caregivers.
      Caregivers with more health problems have been reported to experience greater burden.
      • Mollaoglu M.
      • Kayatas M.
      • Yurugen B.
      Effects on caregiver burden of education related to home care in patients undergoing hemodialysis.
      Few studies trialled an intervention to reduce caregiver burden or improve QoL. A previous systematic review found just 3 studies, which all showed that an education intervention led to improved knowledge of caregivers, but no other outcomes were measured.
      • Tong A.
      • Sainsbury P.
      • Craig J.C.
      Support interventions for caregivers of people with chronic kidney disease: a systematic review.
      Among studies in this systematic review, an education program reduced burden,
      • Mollaoglu M.
      • Kayatas M.
      • Yurugen B.
      Effects on caregiver burden of education related to home care in patients undergoing hemodialysis.
      a continuous care model improved perceived QoL,
      • Rahim A.
      • Alhani F.
      • Ahmadi F.
      • Gholyaf M.
      • Akhoond M.R.
      Effects of a continuous care model on perceived quality of life of spouses of haemodialysis patients.
      and supportive and cognitive behavioral therapy aided maintenance of psychosocial adjustment over time.
      • Hener T.
      • Weisenberg M.
      • Har-Even D.
      Supportive versus cognitive-behavioral intervention programs in achieving adjustment to home peritoneal kidney dialysis.
      These studies are small and require replication, and further work is needed, perhaps by qualitative interviews, to identify which supports are needed and have the greatest impact.
      This systematic review has a number of limitations. Despite using quantitative measures of QoL, many studies only reported data graphically or categorically, which limited our ability to examine the data further. Studies did not report data to allow assessment of the caregiver role and the impact of caregiver age, marital and employment status, or dialysis vintage on caregiver burden and QoL. Overall study quality was generally poor and there is a high likelihood of recruitment or participation bias. Refusal to participate by the most affected patients is an inherent problem with studies that may include those with depression, anxiety, distress, or significant burden.
      • Rideout E.M.
      • Rodin G.M.
      • Littlefield C.H.
      Stress, social support, and symptoms of depression in spouses of the medically ill.
      The limitation to English publications may reduce data available from some cultures or ethnic backgrounds that will not have been included. Caregivers of pediatric dialysis recipients were excluded from this analysis and our findings may not be applicable to this population.
      Relatively few studies in this systematic review were longitudinal in nature or trialled an intervention. These issues must be addressed in future research. Does the caregiver’s QoL reflect the severity of illness and QoL of the dialysis patient or the duration and demands of caregiving? There is also a relative paucity of data surrounding home HD caregivers in comparison to facility HD. Another important area lacking data is the effect of increasing HD frequency or extending HD hours, including at night. Patients enrolled in the FHN trials perceived caregiver burden to be high, but the caregivers themselves did not participate in the study.
      • Suri R.S.
      • Larive B.
      • Garg A.X.
      • et al.
      Burden on caregivers as perceived by hemodialysis patients in the Frequent Hemodialysis Network (FHN) trials.
      The enthusiasm for home HD among some nephrologists, as well as opportunities for novel regimens, highlights a need to explore the impact on caregivers.
      In conclusion, caregivers have an important role in the management of people undergoing dialysis. This review demonstrates that caregiver QoL is adversely affected compared with the general population and comparable to other chronic disease caregivers. Suggestions that home-based therapies strain the caregiver psychosocial well-being
      • Belasco A.G.
      • Sesso R.
      Burden and quality of life of caregivers for hemodialysis patients.
      are not supported by this systematic review, although further work is needed with better longitudinal and case-matched studies. Consensus on the best scales to measure QoL and burden will also assist interpretation of results and reproducibility of data. Last, studying and implementing interventions to assist caregivers and improve their QoL will hopefully enable them to persist in their role and support the dialysis recipient in the long term.

      Article Information

      Authors’ Full Names and Academic Degrees

      Elise L. Gilbertson, MBBS(Hons), Rathika Krishnasamy, PhD, Celine Foote, PhD, Alice L. Kennard, MBBS(Hons), Meg J. Jardine, PhD, and Nicholas A. Gray, MBBS.

      Authors’ Contributions

      Research idea and study design: NAG, MJJ; data acquisition: ELG, CF, ALK, NAG; data analysis/interpretation: RK, NAG, ELG; statistical analysis: RK; supervision or mentorship: NAG, RK, MJJ. Each author contributed important intellectual content during manuscript drafting or revision and accepts accountability for the overall work by ensuring that questions pertaining to the accuracy or integrity of any portion of the work are appropriately investigated and resolved.

      Support

      No financial support for this research was received.

      Financial Disclosure

      The authors declare that they have no relevant financial interests.

      Peer Review

      Received April 10, 2018. Evaluated by 2 external peer reviewers, with direct editorial input from a Statistics/Methods Editor, an Associate Editor, and the Editor-in-Chief. Accepted in revised form September 16, 2018.

      Supplementary Material

      References

        • Cantor M.H.
        Strain among caregivers: a study of experience in the United States.
        Gerontologist. 1983; 23: 597-604
        • Sherwood P.R.
        • Given C.W.
        • Given B.A.
        • von Eye A.
        Caregiver burden and depressive symptoms: analysis of common outcomes in caregivers of elderly patients.
        J Aging Health. 2005; 17: 125-147
        • Schulz R.
        • Beach S.R.
        Caregiving as a risk factor for mortality: the Caregiver Health Effects Study.
        JAMA. 1999; 282: 2215-2219
        • McMillan S.C.
        • Small B.J.
        • Weitzner M.
        • et al.
        Impact of coping skills intervention with family caregivers of hospice patients with cancer: a randomized clinical trial.
        Cancer. 2006; 106: 214-222
        • Haley W.E.
        • Levine E.G.
        • Brown S.L.
        • Berry J.W.
        • Hughes G.H.
        Psychological, social, and health consequences of caring for a relative with senile dementia.
        J Am Geriatr Soc. 1987; 35: 405-411
        • Rainville C.
        • Skufca L.
        • Mehegan L.
        Family Caregiving and Out-of-Pocket Costs: 2016 Report. AARP Research, Washington, DCNovember 2016
        • McClellan W.M.
        • Stanwyck D.J.
        • Anson C.A.
        Social support and subsequent mortality among patients with end-stage renal disease.
        J Am Soc Nephrol. 1993; 4: 1028-1034
        • Morton R.L.
        • Tong A.
        • Howard K.
        • Snelling P.
        • Webster A.C.
        The views of patients and carers in treatment decision making for chronic kidney disease: systematic review and thematic synthesis of qualitative studies.
        BMJ. 2010; 340: c112
        • Evans R.W.
        • Manninen D.L.
        • Garrison Jr., L.P.
        • et al.
        The quality of life of patients with end-stage renal disease.
        N Engl J Med. 1985; 312: 553-559
        • Johnson J.P.
        • McCauley C.R.
        • Copley J.B.
        The quality of life of hemodialysis and transplant patients.
        Kidney Int. 1982; 22: 286-291
        • Iyasere O.U.
        • Brown E.A.
        • Johansson L.
        • et al.
        Quality of life and physical function in older patients on dialysis: a comparison of assisted peritoneal dialysis with hemodialysis.
        Clin J Am Soc Nephrol. 2016; 11: 423-430
        • Saran R.
        • Robinson B.
        • Abbott K.C.
        • et al.
        US Renal Data System 2017 Annual Data Report: epidemiology of kidney disease in the United States.
        Am J Kidney Dis. 2018; 71: S1-S672
        • Gilg J.
        • Pruthi R.
        • Fogarty D.
        UK Renal Registry 17th Annual Report: chapter 1 UK renal replacement therapy incidence in 2013: national and centre-specific analyses.
        Nephron. 2015; 129: 1-29
      1. ANZDATA Registry. The 39th Annual ANZDATA Report (2016), Chapter 4: Haemodialysis. Australia and New Zealand Dialysis and Transplant Registry, Adelaide, Australia. 2017. http://www.anzdata.org.au/anzdata/AnzdataReport/40thReport/c04_haemodialysis_2016_v2.0_20180709.pdf. Accessed November 1, 2018.

      2. Canadian Institute for Health Information. Canadian Organ Replacement Register Annual Report: Treatment of End-Stage Organ Failure in Canada, 2004 to 2014. Ottawa, ON: CIHI; 2016

        • Murray A.M.
        Cognitive impairment in the aging dialysis and chronic kidney disease populations: an occult burden.
        Adv Chronic Kidney Dis. 2008; 15: 123-132
        • Asti T.
        • Kara M.
        • Ipek G.
        • Erci B.
        The experiences of loneliness, depression, and social support of Turkish patients with continuous ambulatory peritoneal dialysis and their caregivers.
        J Clin Nurs. 2006; 15: 490-497
        • Campbell A.R.
        Family caregivers: caring for aging end-stage renal disease partners.
        Adv Renal Replac Ther. 1998; 5: 98-108
        • Derrett S.
        • Samaranayaka A.
        • Schollum J.B.W.
        • et al.
        Predictors of health deterioration among older adults after 12 months of dialysis therapy: a longitudinal cohort study from New Zealand.
        Am J Kidney Dis. 2017; 70: 798-806
        • Wyld M.
        • Morton R.L.
        • Hayen A.
        • Howard K.
        • Webster A.C.
        A systematic review and meta-analysis of utility-based quality of life in chronic kidney disease treatments.
        PLoS Med. 2012; 9: e1001307
      3. Wells GAS, O'Connell B, Peterson D, Welch JV, Losos M, Tugwell P. The Newcastle-Ottawa Scale (NOS) for assessing the quality of nonrandomised studies in meta-analyses 2017. www.ohri.ca/prorams/clinical_epidemiology/oxford.asp. Accessed July 21, 2017.

        • Stang A.
        Critical evaluation of the Newcastle-Ottawa scale for the assessment of the quality of nonrandomized studies in meta-analyses.
        Eur J Epidemiol. 2010; 25: 603-605
        • Rotenstein L.S.
        • Ramos M.A.
        • Torre M.
        • et al.
        Prevalence of depression, depressive symptoms, and suicidal ideation among medical students: a systematic review and meta-analysis.
        JAMA. 2016; 316: 2214-2236
        • Blogg A.E.
        • O'Shaughnessy D.V.
        • Cairns D.R.
        Levels and predictors of distress in home hemodialysis caregivers.
        Dial Transplant. 1999; 28: 507-517
        • Dunn S.A.
        • Lewis S.L.
        • Bonner P.N.
        • Meize-Grochowski R.
        Quality of life for spouses of CAPD patients.
        ANNA J. 1994; 21 (257; discussion 247): 237-246
        • Finkelstein F.O.
        • Finkelstein S.H.
        • Steele T.E.
        Assessment of marital relationships of hemodialysis patients.
        Am J Med Sci. 1976; 271: 21-28
        • Page S.
        • Weisberg M.B.
        Marital and family characteristics of home and hospital dialysis patients.
        Loss Grief Care. 1991; 5: 33-45
        • Peterson K.J.
        Psychosocial adjustment of the family caregiver: home hemodialysis as an example.
        Social Work Health Care. 1985; 10: 15-32
        • Rideout E.M.
        • Rodin G.M.
        • Littlefield C.H.
        Stress, social support, and symptoms of depression in spouses of the medically ill.
        Int J Psychiatry Med. 1990; 20: 37-48
        • Schoeneman S.Z.
        • Reznikoff M.
        • Bacon S.J.
        Personality variables in coping with the stress of a spouse's chronic illness.
        J Clin Psychol. 1983; 39: 430-436
        • Simone S.
        Multi-dimensional assessment of the effects of dialysis on the marital relationship.
        Dissertation Abstracts International. 1986; 47
        • Soskolne V.
        The effect of ethnic origin on personality resources and psychophysiological health in a chronic stress situation: the case of spouses of dialysis patients.
        Israel J Psychiatry Relat Sci. 1984; 21: 137-150
        • Soskolne V.
        • De-Nour A.K.
        Psychosocial adjustment of home hemodialysis, continuous ambulatory peritoneal dialysis and hospital dialysis patients and their spouses.
        Nephron. 1987; 47: 266-273
        • Soskolne V.
        • Kaplan De-Nour A.
        The psychosocial adjustment of patients and spouses to dialysis treatment.
        Soc Sci Med. 1989; 29: 497-502
        • Srivastava R.H.
        Coping strategies used by spouses of CAPD patients.
        ANNA J. 1988; 15: 174-178
        • Wicks M.N.
        • Milstead E.J.
        • Hathaway D.K.
        • Cetingok M.
        Subjective burden and quality of life in family caregivers of patients with end stage renal disease.
        ANNA J. 1997; 24 (531-538; discussion 539-540): 527-528
        • Brackney B.
        The impact of hemodialysis on the marital dyad.
        J Marital Family Ther. 1979; 5: 55-60
        • Daly R.J.
        • Hassall C.
        Reported sleep on maintenance haemodialysis.
        Br Med J. 1970; 2: 508-509
        • Hener T.
        • Weisenberg M.
        • Har-Even D.
        Supportive versus cognitive-behavioral intervention programs in achieving adjustment to home peritoneal kidney dialysis.
        J Consult Clin Psychol. 1996; 64: 731-741
        • Lowry M.R.
        • Atcherson E.
        Spouse-assistants' adjustment to home hemodialysis.
        J Chronic Dis. 1984; 37: 293-300
        • Alvarez-Ude F.
        • Valdes C.
        • Estebanez C.
        • Rebollo P.
        Health-related quality of life of family caregivers of dialysis patients.
        J Nephrol. 2004; 17: 841-850
        • Anees M.
        • Hameed F.
        • Mumtaz A.
        • Ibrahim M.
        • Saeed Khan M.N.
        Dialysis-related factors affecting quality of life in patients on hemodialysis.
        Iran J Kidney Dis. 2011; 5: 9-14
        • Belasco A.
        • Barbosa D.
        • Bettencourt A.R.
        • Diccini S.
        • Sesso R.
        Quality of life of family caregivers of elderly patients on hemodialysis and peritoneal dialysis.
        Am J Kidney Dis. 2006; 48: 955-963
        • Belasco A.G.
        • Sesso R.
        Burden and quality of life of caregivers for hemodialysis patients.
        Am J Kidney Dis. 2002; 39: 805-812
        • Byers D.J.
        • Mona N.W.
        • Beard T.H.
        Depressive symptoms and health promotion behaviors of African-American women who are family caregivers of hemodialysis recipients.
        Nephrol Nurs J. 2011; 38 (quiz 431): 425-430
        • Celik G.
        • Annagur B.B.
        • Yilmaz M.
        • Demir T.
        • Kara F.
        Are sleep and life quality of family caregivers affected as much as those of hemodialysis patients?.
        Gen Hosp Psychiatry. 2012; 34: 518-524
        • Courts N.F.
        Psychosocial adjustment of patients on home hemodialysis and their dialysis partners.
        Clin Nurs Res. 2000; 9: 177-190
        • Daneker B.
        • Kimmel P.L.
        • Ranich T.
        • Peterson R.A.
        Depression and marital dissatisfaction in patients with end-stage renal disease and in their spouses.
        Am J Kidney Dis. 2001; 38: 839-846
        • Fan S.L.
        • Sathick I.
        • McKitty K.
        • Punzalan S.
        Quality of life of caregivers and patients on peritoneal dialysis.
        Nephrol Dial Transplant. 2008; 23: 1713-1719
        • Ferrario S.R.
        • Zotti A.M.
        • Baroni A.
        • Cavagnino A.
        • Fornara R.
        Emotional reactions and practical problems of the caregivers of hemodialysed patients.
        J Nephrol. 2002; 15: 54-60
        • Harris T.
        Burden and health in caregivers of persons with kidney disease.
        Dissertation Abstracts International. 2003; 64
        • Harris T.T.
        • Thomas C.M.
        • Wicks M.N.
        • Faulkner M.S.
        • Hathaway D.K.
        Subjective burden in young and older African-American caregivers of patients with end stage renal disease awaiting transplant.
        Nephrol Nurs J. 2000; 27 (355; discussion 392, 405): 383-391
        • Khaira A.
        • Mahajan S.
        • Khatri P.
        • Bhowmik D.
        • Gupta S.
        • Agarwal S.K.
        Depression and marital dissatisfaction among Indian hemodialysis patients and their spouses: a cross-sectional study.
        Ren Fail. 2012; 34: 316-322
        • Klak R.
        • Rymaszewska J.
        • Watorek E.
        • et al.
        Exhaustion of caregivers of patients on maintenance haemodialysis [letter to the editor].
        Nephrol Dial Transplant. 2008; 23: 4086
        • Lindqvist R.
        • Carlsson M.
        • Sjoden P.O.
        Coping strategies and health-related quality of life among spouses of continuous ambulatory peritoneal dialysis, haemodialysis, and transplant patients.
        J Adv Nurs. 2000; 31: 1398-1408
        • Matsuu K.
        • Washio M.
        • Arai Y.
        • et al.
        Depression among caregivers of elderly patients on chronic hemodialysis.
        Fukuoka Igaku Zasshi. 2001; 92: 319-325
        • Morelon E.
        • Berthoux F.
        • Brun-Strang C.
        • Fior S.
        • Volle R.
        Partners' concerns, needs and expectations in ESRD: results of the CODIT Study.
        Nephrol Dial Transplant. 2005; 20: 1670-1675
        • Piira T.
        • Chow J.
        • Suranyi M.
        The role of cognitive factors in the adjustment of home dialysis carers.
        Psychol Health. 2002; 17: 313-322
        • Rahim A.
        • Alhani F.
        • Ahmadi F.
        • Gholyaf M.
        • Akhoond M.R.
        Effects of a continuous care model on perceived quality of life of spouses of haemodialysis patients.
        Eastern Mediterr Health J. 2009; 15: 944-950
        • Rai M.
        • Rustagi T.
        • Rustagi S.
        • Kohli R.
        Depression, insomnia and sleep apnea in patients on maintenance hemodialysis.
        Indian J Nephrol. 2011; 21: 223-229
        • Rioux J.P.
        • Narayanan R.
        • Chan C.T.
        Caregiver burden among nocturnal home hemodialysis patients.
        Hemodial Int. 2012; 16: 214-219
        • Schneider R.
        The SF-36 and the MFI-20 in assessing fatigue among female caregivers of male hemodialysis patients.
        J Mental Health Aging. 2002; 8: 214-219
        • Schneider R.A.
        Chronic renal failure: assessing the Fatigue Severity Scale for use among caregivers.
        J Clin Nurs. 2004; 13: 219-225
        • Sezer M.T.
        • Eren I.
        • Ozcankaya R.
        • Civi I.
        • Erturk J.
        • Ozturk M.
        Psychological symptoms are greater in caregivers of patients on hemodialysis than those of peritoneal dialysis.
        Hemodial Int. 2003; 7: 332-337
        • Shimoyama S.
        • Hirakawa O.
        • Yahiro K.
        • Mizumachi T.
        • Schreiner A.
        • Kakuma T.
        Health-related quality of life and caregiver burden among peritoneal dialysis patients and their family caregivers in Japan.
        Perit Dial Int. 2003; 23: S200-S205
        • Yilmaz A.
        • Kocak O.M.
        • Aygor B.
        • et al.
        Sexual functioning in hemodialysis patients and their spouses: results of a prospective study from Turkey.
        Turk J Med Sci. 2009; 39: 405-414
        • Pruchno R.
        • Wilson-Genderson M.
        • Cartwright F.P.
        Depressive symptoms and marital satisfaction in the context of chronic disease: a longitudinal dyadic analysis.
        J Fam Psychol. 2009; 23: 573-584
        • Starzomski R.
        • Hilton A.
        Patient and family adjustment to kidney transplantation with and without an interim period of dialysis.
        Nephrol Nurs J. 2000; 27 (21-32; discussion 33, 52): 17-18
        • Avsar U.
        • Avsar U.Z.
        • Cansever Z.
        • et al.
        Psychological and emotional status, and caregiver burden in caregivers of patients with peritoneal dialysis compared with caregivers of patients with renal transplantation.
        Transplant Proc. 2013; 45: 883-886
        • Mollaoglu M.
        • Kayatas M.
        • Yurugen B.
        Effects on caregiver burden of education related to home care in patients undergoing hemodialysis.
        Hemodial Int. 2013; 17: 413-420
        • Saeed Z.
        • Ahmad A.M.
        • Shakoor A.
        • Ghafoor F.
        • Kanwal S.
        Depression in patients on hemodialysis and their caregivers.
        Saudi J Kidney Dis Transpl. 2012; 23: 946-952
        • Washio M.
        • Yoshido H.
        • Ura N.
        • et al.
        Burden among family caregivers of patients on chronic hemodialysis in northern Japan.
        Int Med J. 2012; 19: 221-223
        • Sezer S.
        • Uyar M.E.
        • Bal Z.
        • Tutal E.
        • Ozdemir Acar F.N.
        The influence of socioeconomic factors on depression in maintenance hemodialysis patients and their caregivers.
        Clin Nephrol. 2013; 80: 342-348
        • Kang A.
        • Yu Z.
        • Foo M.
        • et al.
        A longitudinal study of burden, quality of life and emotional distress in caregivers of peritoneal dialysis patients.
        Nephrol Dial Transplant. 2014; 29: iii283-iii284
        • Parlevliet J.L.
        • Buurman B.M.
        • Pannekeet M.M.
        • et al.
        Systematic comprehensive geriatric assessment in elderly patients on chronic dialysis: a cross-sectional comparative and feasibility study.
        BMC Nephrol. 2012; 13: 30
        • Suri R.S.
        • Larive B.
        • Hall Y.
        • et al.
        Effects of frequent hemodialysis on perceived caregiver burden in the Frequent Hemodialysis Network trials.
        Clin J Am Soc Nephrol. 2014; 9: 936-942
        • Antonaki E.
        • Xidakis D.
        Determinants of burden and quality of life in caregivers of dialysis patients in a descriptive cross sectional study [poster].
        Nephrol Dial Transplant. 2016; 31: i546
        • Jiang H.
        • Wang L.
        • Zhang Q.
        • et al.
        Family functioning, marital satisfaction and social support in hemodialysis patients and their spouses.
        Stress Health. 2015; 31: 166-174
        • Avsar U.
        • Avsar U.Z.
        • Cansever Z.
        • et al.
        Caregiver burden, anxiety, depression, and sleep quality differences in caregivers of hemodialysis patients compared with renal transplant patients.
        Transplant Proc. 2015; 47: 1388-1391
        • Yu Z.L.
        • Seow Y.Y.
        • Seow P.S.
        • Tan B.L.
        Effectiveness of a day care program in supporting patients on peritoneal dialysis and their caregivers.
        Int Urol Nephrol. 2016; 48: 799-805
        • Cantekin I.
        • Kavurmaci M.
        • Tan M.
        An analysis of caregiver burden of patients with hemodialysis and peritoneal dialysis.
        Hemodial Int. 2016; 20: 94-97
        • Griva K.
        • Goh C.S.
        • Kang W.C.
        • et al.
        Quality of life and emotional distress in patients and burden in caregivers: a comparison between assisted peritoneal dialysis and self-care peritoneal dialysis.
        Qual Life Res. 2016; 25: 373-384
        • Al Wakeel J.S.
        • Bayoumi M.M.
        Caregiver burden among peritoneal dialysis and hemodialysis family in Saudi Arabia.
        Kuwait Med J. 2016; 48: 197-201
        • Tong A.
        • Manns B.
        • Hemmelgarn B.
        • et al.
        Establishing core outcome domains in hemodialysis: report of the Standardized Outcomes in Nephrology-Hemodialysis (SONG-HD) Consensus Workshop.
        Am J Kidney Dis. 2017; 69: 97-107
        • Atcherson E.
        The quality of life: a study of hemodialysis patients.
        Health Social Work. 1978; 3: 54-69
        • Beanlands H.
        • Horsburgh M.E.
        • Fox S.
        • et al.
        Caregiving by family and friends of adults receiving dialysis.
        Nephrol Nurs J. 2005; 32: 621-631
        • Brunier G.M.
        • McKeever P.T.
        The impact of home dialysis on the family: literature review.
        ANNA J. 1993; 20: 653-659
        • Wasserfallen J.B.
        • Halabi G.
        • Saudan P.
        • et al.
        Quality of life on chronic dialysis: comparison between haemodialysis and peritoneal dialysis.
        Nephrol Dial Transplant. 2004; 19: 1594-1599
        • Tong A.
        • Sainsbury P.
        • Craig J.C.
        Support interventions for caregivers of people with chronic kidney disease: a systematic review.
        Nephrol Dial Transplant. 2008; 23: 3960-3965
        • Suri R.S.
        • Larive B.
        • Garg A.X.
        • et al.
        Burden on caregivers as perceived by hemodialysis patients in the Frequent Hemodialysis Network (FHN) trials.
        Nephrol Dial Transplant. 2011; 26: 2316-2322