title: Health-related and psychosocial concerns about transplantation among patients initiating dialysis.
abstract: OBJECTIVE
  Disparities in kidney transplantation remain; one mechanism for disparities in access to transplantation (ATT) may be patient-perceived concerns about pursuing transplantation. This study sought to characterize prevalence of patient-perceived concerns, explore interrelationships between concerns, determine patient characteristics associated with concerns, and assess the effect of concerns on ATT.
  
  
  METHODS
  Prevalences of 12 patient-perceived concerns about pursuing transplantation were determined among 348 adults who recently initiated dialysis, recruited from 26 free-standing dialysis centers around Baltimore, Maryland (January 2009-March 2012). Using variable reduction techniques, concerns were clustered into two categories (health-related and psychosocial) and quantified with scale scores. Associations between patient characteristics and concerns were estimated using modified Poisson regression. Associations between concerns and ATT were estimated using Cox models.
  
  
  RESULTS
  The most frequently cited patient-perceived concerns were that participants felt they were doing fine on dialysis (68.4%) and felt uncomfortable asking someone to donate a kidney (29.9%). Older age was independently associated with having high health-related (adjusted relative risk, 1.35 [95% confidence interval, 1.20 to 1.51], for every 5 years older for those ≥ 60 years) or psychosocial (1.15 [1.00 to 1.31], for every 5 years older for those aged ≥ 60 years) concerns, as was being a woman (1.72 [1.21 to 2.43] and 1.55 [1.09 to 2.20]), having less education (1.59 [1.08 to 2.35] and 1.77 [1.17 to 2.68], comparing postsecondary education to grade school or less), and having more comorbidities (1.18 [1.08 to 1.30] and 1.18 [1.07 to 1.29], per one comorbidity increase). Having never seen a nephrologist before dialysis initiation was associated with high psychosocial concerns (1.48 [1.01 to 2.18]). Those with high health-related (0.37 [0.16 to 0.87]) or psychosocial (0.47 [0.23 to 0.95]) concerns were less likely to achieve ATT (median follow-up time 2.2 years; interquartile range, 1.6-3.2).
  
  
  CONCLUSIONS
  Patient-perceived concerns about pursuing kidney transplantation are highly prevalent, particularly among older adults and women. Reducing these concerns may help decrease disparities in ATT.
authors.affiliation: Departments of Epidemiology and Johns Hopkins Center on Aging and Health, Baltimore, Maryland;
authors.forename: Megan L
authors.initials: ML
authors.lastname: Salter
authors.affiliation: Departments of Surgery and.
authors.forename: Natasha
authors.initials: N
authors.lastname: Gupta
authors.affiliation: Departments of Surgery and.
authors.forename: Elizabeth
authors.initials: E
authors.lastname: King
authors.affiliation: Johns Hopkins Center on Aging and Health, Baltimore, Maryland; Biostatistics, Johns Hopkins School of Public Health, Baltimore, Maryland;
authors.forename: Karen
authors.initials: K
authors.lastname: Bandeen-Roche
authors.affiliation: Departments of Epidemiology and Departments of Surgery and.
authors.forename: Andrew H
authors.initials: AH
authors.lastname: Law
authors.affiliation: Departments of Epidemiology and Departments of Surgery and.
authors.forename: Mara A
authors.initials: MA
authors.lastname: McAdams-DeMarco
authors.affiliation: Biostatistics, Johns Hopkins School of Public Health, Baltimore, Maryland; Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland; Welch Center for Prevention, Epidemiology, and Clinical Research, Baltimore, Maryland;
authors.forename: Lucy A
authors.initials: LA
authors.lastname: Meoni
authors.affiliation: Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland; Welch Center for Prevention, Epidemiology, and Clinical Research, Baltimore, Maryland; Nephrology Center of Maryland, Baltimore, Maryland;
authors.forename: Bernard G
authors.initials: BG
authors.lastname: Jaar
authors.affiliation: Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland; Welch Center for Prevention, Epidemiology, and Clinical Research, Baltimore, Maryland;
authors.forename: Stephen M
authors.initials: SM
authors.lastname: Sozio
authors.affiliation: Departments of Epidemiology and Welch Center for Prevention, Epidemiology, and Clinical Research, Baltimore, Maryland;
authors.forename: Wen Hong Linda
authors.initials: WH
authors.lastname: Kao
authors.affiliation: Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland; Division of Nephrology, Hospital for Sick Children, University Health Network, Toronto, Ontario, Canada; and Departments of Pediatrics and Medicine, University of Toronto, Toronto, Ontario, Canada.
authors.forename: Rulan S
authors.initials: RS
authors.lastname: Parekh
authors.affiliation: Departments of Epidemiology and Departments of Surgery and dorry@jhmi.edu.
authors.forename: Dorry L
authors.initials: DL
authors.lastname: Segev
mesh_terms: D000367:Age Factors; D004522:Educational Status; D005239:Fear; D005260:Female; D007722:Health Knowledge, Attitudes, Practice / Q000208:ethnology; D006297:Health Services Accessibility; D006304:Health Status; D054625:Healthcare Disparities; D006801:Humans; D007676:Kidney Failure, Chronic / Q000523:psychology / Q000628:therapy; D016030:Kidney Transplantation / Q000523:psychology* / Q000706:statistics & numerical data*; D019520:Living Donors; D008297:Male; D008875:Middle Aged; D009398:Nephrology / Q000706:statistics & numerical data; D010342:Patient Acceptance of Health Care / Q000208:ethnology / Q000523:psychology*; D006435:Renal Dialysis / Q000523:psychology; D012737:Sex Factors; D014481:United States; D014850:Waiting Lists
keywords: ESRD; barriers; dialysis; epidemiology; outcomes; transplantation