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      Effectiveness of informational decision aids and a live donor financial assistance program on pursuit of live kidney transplants in African American hemodialysis patients

      research-article
      1 , , 2 , 3 , 3 , 4 , 3 , 4 , 5 , 6 , 3 , 4 , 3 , 5 , 3 , 4 , 5 , 3 , 4 , 3 , 4 , 6 , 3 , 7 , 2 , 3 , 5 , 8 , 3 , 4 , 3 , 4 , 3 , 4 , 3 , 4 , 9 , 9 , 10 , 10 , 2 , 3 , 4 , 11 , 1 , 12
      BMC Nephrology
      BioMed Central
      Decision aid, End stage renal disease, Financial support, Live donor kidney transplant, Race disparities

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          Abstract

          Background

          African Americans have persistently poor access to living donor kidney transplants (LDKT). We conducted a small randomized trial to provide preliminary evidence of the effect of informational decision support and donor financial assistance interventions on African American hemodialysis patients’ pursuit of LDKT.

          Methods

          Study participants were randomly assigned to receive (1) Usual Care; (2) the Providing Resources to Enhance African American Patients’ Readiness to Make Decisions about Kidney Disease (PREPARED); or (3) PREPARED plus a living kidney donor financial assistance program. Our primary outcome was patients’ actions to pursue LDKT (discussions with family, friends, or doctor; initiation or completion of the recipient LDKT medical evaluation; or identification of a donor). We also measured participants’ attitudes, concerns, and perceptions of interventions’ usefulness.

          Results

          Of 329 screened, 92 patients were eligible and randomized to Usual Care ( n = 31), PREPARED ( n = 30), or PREPARED plus financial assistance ( n = 31). Most participants reported interventions helped their decision making about renal replacement treatments (62%). However there were no statistically significant improvements in LDKT actions among groups over 6 months. Further, no participants utilized the living donor financial assistance benefit.

          Conclusions

          Findings suggest these interventions may need to be paired with personal support or navigation services to overcome key communication, logistical, and financial barriers to LDKT.

          Trial registration

          ClinicalTrials.gov [ NCT01439516] [August 31, 2011].

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          Most cited references30

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          The family APGAR: a proposal for a family function test and its use by physicians.

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            The effect of patients' preferences on racial differences in access to renal transplantation.

            In the United States, black patients undergo renal transplantation less often than white patients, but few studies have directly assessed the association between race and patients' preferences with respect to transplantation. To assess preferences with respect to transplantation and experiences with medical care, we interviewed 1392 (82.9 percent) of 1679 eligible patients with end-stage renal disease (age range, 18 to 54 years) approximately 10 months after they had begun maintenance treatment with dialysis. Participants were selected from a stratified random sample of patients undergoing dialysis in four regions of the United States (Alabama, southern California, Michigan, and the mid-Atlantic region of Maryland, Virginia, and the District of Columbia) in 1996 and 1997. Patients were followed until March 1999. The interviews were conducted with 384 black women, 354 white women, 337 black men, and 317 white men. Black patients were less likely than white patients to want a transplant (76.3 percent of black women reported such a preference, vs. 79.3 percent of white women, and 80.7 percent of black men vs. 85.5 percent of white men), and they were less likely to be very certain about this preference (58.3 percent vs. 65.3 percent and 64.1 percent vs. 75.7 percent, respectively; P<0.01 for each comparison with both sexes combined). However, much larger differences were evident in rates of referral for evaluation at a transplantation center (50.4 percent for black women vs. 70.5 percent for white women, and 53.9 percent for black men vs. 76.2 percent for white men; P<0.001 for each comparison) and placement on a waiting list or transplantation within 18 months after the start of dialysis therapy (31.3 percent for black women vs. 56.5 percent for white women, and 35.3 percent for black men vs. 60.6 percent for white men; P<0.001). These racial differences remained significant after adjustment for patients' preferences and expectations about transplantation, sociodemographic characteristics, the type of dialysis facility, perceptions of care, health status, the cause of renal failure, and the presence or absence of coexisting illnesses. In the United States, the preferences and expectations with respect to renal transplantation among patients with end-stage renal disease differ according to race. These differences, however, explain only a small fraction of the substantial racial differences in access to transplantation. Physicians should ensure that black patients who desire renal transplantation are fully informed about it and are referred for evaluation.
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              Perceived knowledge among patients cared for by nephrologists about chronic kidney disease and end-stage renal disease therapies.

              The need to educate patients in order to enable them to participate in making appropriate choices for all therapeutic options in end stage renal disease would seem obvious yet there are many barriers to providing such information. We measured 'perceived knowledge' of the therapeutic options for end stage renal disease in a cohort of patients with chronic kidney disease in established treatment programs. A self administered questionnaire was given to 676 patients with stage 3-5 chronic kidney disease as part of the CRIOS study designed to identify trends in practice patterns and outcomes over a 4 year period. The median patient age was 66, about three-fourths were Caucasian and almost half were diabetic. When patients were asked to rate their level of knowledge, about one-third reported limited or no understanding of their chronic kidney disease and no awareness regarding their treatment options. A significant and substantial number of patients indicated they had no familiarity with transplant, hemodialysis, and continuous ambulatory or automated peritoneal dialysis. Perceived knowledge improved with the progression of kidney disease and frequency of nephrology visits; however, only about half of patients with 4 or more nephrology appointments in the prior year reported knowing of hemodialysis, continuous ambulatory peritoneal dialysis or transplant. Age, gender and disease had no impact on levels of patient knowledge, but African-Americans reported having significantly less understanding than Asians or Caucasians. These findings suggest that the lack of perception concerning the treatment options chronic kidney and end stage renal disease reflects, in part, problems with the education of patients by nephrologists and not a lack of referral of these patients to nephrologists for care. The discrepancy of perceived knowledge between African-Americans and other races needs special attention.
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                Author and article information

                Contributors
                919-613-209 , ebony.boulware@duke.edu
                pephraim@jhu.edu
                jameling@umich.edu
                llewis3@jhmi.edu
                hrabb1@jhmi.edu
                rgreer@jhmi.edu
                dcrews1@jhmi.edu
                bjaar@aol.com
                priscillaauguste@students.rossu.edu
                tpurnel1@jhmi.edu
                jlamprea@uw.edu
                olufadet@yahoo.com
                lgimene1@jhmi.edu
                ccook17@jhmi.edu
                tcampb13@jhmi.edu
                ashmarie44@gmail.com
                hramamu1@jhu.edu
                tina.davenport@duke.edu
                kingshuk.roy.choudhury@dm.duke.edu
                MWEIR@medicine.umaryland.edu
                dhanes@medicine.umaryland.edu
                naeyuh@jhmi.edu
                hbliss4@yahoo.com
                Neil.Powe@ucsf.edu
                Journal
                BMC Nephrol
                BMC Nephrol
                BMC Nephrology
                BioMed Central (London )
                1471-2369
                3 May 2018
                3 May 2018
                2018
                : 19
                : 107
                Affiliations
                [1 ]ISNI 0000 0004 1936 7961, GRID grid.26009.3d, Division of General Internal Medicine, , Duke University School of Medicine, ; 411 W. Chapel Hill, St Suite 500, Durham, NC 27110 USA
                [2 ]ISNI 0000 0001 2171 9311, GRID grid.21107.35, Department of Epidemiology, , Johns Hopkins Bloomberg School of Public Health, ; Baltimore, MD USA
                [3 ]Welch Center for Prevention, Epidemiology and Clinical Research, Baltimore, MD USA
                [4 ]ISNI 0000 0001 2171 9311, GRID grid.21107.35, Division of General Internal Medicine, , Johns Hopkins School of Medicine, ; Baltimore, MD USA
                [5 ]ISNI 0000 0001 2171 9311, GRID grid.21107.35, Division of Nephrology, , Johns Hopkins School of Medicine, ; Baltimore, MD USA
                [6 ]ISNI 0000 0001 2171 9311, GRID grid.21107.35, Department of Surgery, , Johns Hopkins School of Medicine, ; Baltimore, MD USA
                [7 ]ISNI 0000000122986657, GRID grid.34477.33, Department of Cardiology, , University of Washington School of Medicine, ; Seattle, WA USA
                [8 ]GRID grid.413163.2, Nephrology Center of Maryland at MedStar Good Samaritan Hospital, ; Baltimore, MD USA
                [9 ]ISNI 0000 0004 1936 7961, GRID grid.26009.3d, Department of Biostatistics and Bioinformatics, , Duke University School of Medicine, ; Durham, NC USA
                [10 ]ISNI 0000 0001 2175 4264, GRID grid.411024.2, Division of Nephrology, , University of Maryland School of Medicine, ; Baltimore, MD USA
                [11 ]ISNI 0000 0001 2171 9311, GRID grid.21107.35, Department of Biostatistics, , Johns Hopkins Bloomberg School of Public Health, ; Baltimore, MD USA
                [12 ]ISNI 0000 0001 2348 2960, GRID grid.416732.5, Department of Medicine, , San Francisco General Hospital and University of California, ; San Francisco, CA USA
                Author information
                http://orcid.org/0000-0002-8650-4212
                Article
                901
                10.1186/s12882-018-0901-x
                5934897
                29724177
                b66caf58-5e08-4fcd-8f73-01d1673c947b
                © The Author(s). 2018

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                History
                : 27 November 2017
                : 22 April 2018
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/100000062, National Institute of Diabetes and Digestive and Kidney Diseases;
                Award ID: R01DK079682
                Award Recipient :
                Funded by: National Center for Advancing Translational Sciences of the National Institutes of Health
                Award ID: UL1TR001117
                Award Recipient :
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2018

                Nephrology
                decision aid,end stage renal disease,financial support,live donor kidney transplant,race disparities

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