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Published in: BMC Nephrology 1/2018

Open Access 01-12-2018 | Research article

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

Authors: L. Ebony Boulware, Patti L. Ephraim, Jessica Ameling, LaPricia Lewis-Boyer, Hamid Rabb, Raquel C. Greer, Deidra C. Crews, Bernard G. Jaar, Priscilla Auguste, Tanjala S. Purnell, Julio A. Lamprea-Monteleagre, Tope Olufade, Luis Gimenez, Courtney Cook, Tiffany Campbell, Ashley Woodall, Hema Ramamurthi, Cleomontina A. Davenport, Kingshuk Roy Choudhury, Matthew R. Weir, Donna S. Hanes, Nae-Yuh Wang, Helene Vilme, Neil R. Powe

Published in: BMC Nephrology | Issue 1/2018

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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].
Literature
7.
go back to reference Gore JL, Danovitch GM, Litwin MS, Pham PTT, Singer JS. Disparities in the utilization of live donor renal transplantation. Am J Transplant. 2009;9(5):1124–33.CrossRefPubMed Gore JL, Danovitch GM, Litwin MS, Pham PTT, Singer JS. Disparities in the utilization of live donor renal transplantation. Am J Transplant. 2009;9(5):1124–33.CrossRefPubMed
9.
go back to reference Ayanian JZ, Cleary PD, Weissman JS, Epstein AM. The effect of patients’ preferences on racial differences in access to renal transplantation. N Engl J Med. 1999;341(22):1661–9.CrossRefPubMed Ayanian JZ, Cleary PD, Weissman JS, Epstein AM. The effect of patients’ preferences on racial differences in access to renal transplantation. N Engl J Med. 1999;341(22):1661–9.CrossRefPubMed
10.
go back to reference Finkelstein FO, Story K, Firanek C, et al. Perceived knowledge among patients cared for by nephrologists about chronic kidney disease and end-stage renal disease therapies. Kidney Int. 2008;74(9):1178–84.CrossRefPubMed Finkelstein FO, Story K, Firanek C, et al. Perceived knowledge among patients cared for by nephrologists about chronic kidney disease and end-stage renal disease therapies. Kidney Int. 2008;74(9):1178–84.CrossRefPubMed
11.
go back to reference Lunsford SL, Simpson KS, Chavin KD, et al. Racial disparities in living kidney donation: is there a lack of willing donors or an excess of medically unsuitable candidates? Transplantation. 2006;82(7):876–81.CrossRefPubMed Lunsford SL, Simpson KS, Chavin KD, et al. Racial disparities in living kidney donation: is there a lack of willing donors or an excess of medically unsuitable candidates? Transplantation. 2006;82(7):876–81.CrossRefPubMed
12.
go back to reference Lunsford SL, Shilling LM, Chavin KD, et al. Racial differences in the living kidney donation experience and implications for education. Prog Transplant. 2007;17(3):234–40.CrossRefPubMed Lunsford SL, Shilling LM, Chavin KD, et al. Racial differences in the living kidney donation experience and implications for education. Prog Transplant. 2007;17(3):234–40.CrossRefPubMed
13.
go back to reference Purnell TS, Hall YN, Boulware LE. Understanding and overcoming barriers to living kidney donation among United States racial and ethnic minorities. Adv Chronic Kidney Dis. 2012;19(4):244–51.CrossRefPubMedPubMedCentral Purnell TS, Hall YN, Boulware LE. Understanding and overcoming barriers to living kidney donation among United States racial and ethnic minorities. Adv Chronic Kidney Dis. 2012;19(4):244–51.CrossRefPubMedPubMedCentral
14.
go back to reference Kasiske BL, London W, Ellison MD. Race and socioeconomic factors influencing early placement on the kidney transplant waiting list. J Am Soc Nephrol. 1998;9(11):2142–7.PubMed Kasiske BL, London W, Ellison MD. Race and socioeconomic factors influencing early placement on the kidney transplant waiting list. J Am Soc Nephrol. 1998;9(11):2142–7.PubMed
15.
go back to reference Ganji S, Ephraim PL, Ameling JM, Purnell TS, Lewis-Boyer LL, Boulware LE. Concerns regarding the financial aspects of kidney transplantation: perspectives of pre-transplant patients and their family members. Clin Transpl. 2014;28(10):1121–30.CrossRef Ganji S, Ephraim PL, Ameling JM, Purnell TS, Lewis-Boyer LL, Boulware LE. Concerns regarding the financial aspects of kidney transplantation: perspectives of pre-transplant patients and their family members. Clin Transpl. 2014;28(10):1121–30.CrossRef
16.
go back to reference Boulware LE, Troll MU, Wang NY, Powe NR. Public attitudes toward incentives for organ donation: a national study of different racial/ethnic and income groups. Am J Transplant. 2006;6(11):2774–85.CrossRefPubMed Boulware LE, Troll MU, Wang NY, Powe NR. Public attitudes toward incentives for organ donation: a national study of different racial/ethnic and income groups. Am J Transplant. 2006;6(11):2774–85.CrossRefPubMed
17.
go back to reference Waterman AD, Morgievich M, Cohen DJ, et al. Living donor kidney transplantation: improving education outside of transplant centers about live donor transplantation--recommendations from a consensus conference. Clin J Am Soc Nephrol. 2015;10(9):1659–69.CrossRefPubMedPubMedCentral Waterman AD, Morgievich M, Cohen DJ, et al. Living donor kidney transplantation: improving education outside of transplant centers about live donor transplantation--recommendations from a consensus conference. Clin J Am Soc Nephrol. 2015;10(9):1659–69.CrossRefPubMedPubMedCentral
18.
go back to reference Rodrigue JR, Kazley AS, Mandelbrot DA, et al. Living donor kidney transplantation: overcoming disparities in live kidney donation in the US--recommendations from a consensus conference. Clin J Am Soc Nephrol. 2015;10(9):1687–95.CrossRefPubMedPubMedCentral Rodrigue JR, Kazley AS, Mandelbrot DA, et al. Living donor kidney transplantation: overcoming disparities in live kidney donation in the US--recommendations from a consensus conference. Clin J Am Soc Nephrol. 2015;10(9):1687–95.CrossRefPubMedPubMedCentral
20.
go back to reference Ephraim PL, Powe NR, Rabb H, et al. The providing resources to enhance African American patients’ readiness to make decisions about kidney disease (PREPARED) study: protocol of a randomized controlled trial. BMC Nephrol. 2012;13(1):135.CrossRefPubMedPubMedCentral Ephraim PL, Powe NR, Rabb H, et al. The providing resources to enhance African American patients’ readiness to make decisions about kidney disease (PREPARED) study: protocol of a randomized controlled trial. BMC Nephrol. 2012;13(1):135.CrossRefPubMedPubMedCentral
21.
go back to reference Borson S, Scanlan JM, Chen P, Ganguli M. The mini-cog as a screen for dementia: validation in a population-based sample. J Am Geriatr Soc. 2003;51(10):1451–4.CrossRefPubMed Borson S, Scanlan JM, Chen P, Ganguli M. The mini-cog as a screen for dementia: validation in a population-based sample. J Am Geriatr Soc. 2003;51(10):1451–4.CrossRefPubMed
22.
go back to reference Ameling JM, Auguste P, Ephraim PL, et al. Development of a decision aid to inform patients’ and families’ renal replacement therapy selection decisions. BMC Med Inform Decis Mak. 2012;12:140.CrossRefPubMedPubMedCentral Ameling JM, Auguste P, Ephraim PL, et al. Development of a decision aid to inform patients’ and families’ renal replacement therapy selection decisions. BMC Med Inform Decis Mak. 2012;12:140.CrossRefPubMedPubMedCentral
23.
go back to reference Meyer NL, Mercer BM, Friedman SA, Sibai BM. Urinary dipstick protein: a poor predictor of absent or severe proteinuria. Am J Obstet Gynecol. 1994;170(1 Pt 1):137–41.CrossRefPubMed Meyer NL, Mercer BM, Friedman SA, Sibai BM. Urinary dipstick protein: a poor predictor of absent or severe proteinuria. Am J Obstet Gynecol. 1994;170(1 Pt 1):137–41.CrossRefPubMed
24.
go back to reference Smilkstein G. The family APGAR: a proposal for a family function test and its use by physicians. J Fam Pract. 1978;6(6):1231–9.PubMed Smilkstein G. The family APGAR: a proposal for a family function test and its use by physicians. J Fam Pract. 1978;6(6):1231–9.PubMed
25.
go back to reference Prawitz AD, Garman ET, Sorhaindo B, O'Neill B, Kim J, Drentea P. Charge financial distress/financial well-being scale: Development, administration, and score interpretation. J Financ Couns Plan 2006;17(1):34–49. Prawitz AD, Garman ET, Sorhaindo B, O'Neill B, Kim J, Drentea P. Charge financial distress/financial well-being scale: Development, administration, and score interpretation. J Financ Couns Plan 2006;17(1):34–49.
26.
go back to reference Charlson ME, Charlson RE, Peterson JC, Marinopoulos SS, Briggs WM, Hollenberg JP. The Charlson comorbidity index is adapted to predict costs of chronic disease in primary care patients. J Clin Epidemiol. 2008;61(12):1234–40.CrossRefPubMed Charlson ME, Charlson RE, Peterson JC, Marinopoulos SS, Briggs WM, Hollenberg JP. The Charlson comorbidity index is adapted to predict costs of chronic disease in primary care patients. J Clin Epidemiol. 2008;61(12):1234–40.CrossRefPubMed
27.
go back to reference Kroenke K, Strine TW, Spitzer RL, Williams JB, Berry JT, Mokdad AH. The PHQ-8 as a measure of current depression in the general population. J Affect Disord. 2009;114(1–3):163–73.CrossRefPubMed Kroenke K, Strine TW, Spitzer RL, Williams JB, Berry JT, Mokdad AH. The PHQ-8 as a measure of current depression in the general population. J Affect Disord. 2009;114(1–3):163–73.CrossRefPubMed
28.
go back to reference Weidmer BA, Cleary PD, Keller S, et al. Development and evaluation of the CAHPS (consumer assessment of healthcare providers and systems) survey for in-center hemodialysis patients. Am J Kidney Dis. 2014;64(5):753–60.CrossRefPubMedPubMedCentral Weidmer BA, Cleary PD, Keller S, et al. Development and evaluation of the CAHPS (consumer assessment of healthcare providers and systems) survey for in-center hemodialysis patients. Am J Kidney Dis. 2014;64(5):753–60.CrossRefPubMedPubMedCentral
29.
go back to reference Ephraim PL, Powe NR, Rabb H, et al. The providing resources to enhance African American patients’ readiness to make decisions about kidney disease (PREPARED) study: protocol of a randomized controlled trial. BMC Nephrol. 2012;13(135):1–8. Ephraim PL, Powe NR, Rabb H, et al. The providing resources to enhance African American patients’ readiness to make decisions about kidney disease (PREPARED) study: protocol of a randomized controlled trial. BMC Nephrol. 2012;13(135):1–8.
30.
go back to reference Pradel FG, Suwannaprom P, Mullins CD, Sadler J, ST B. Haemodialysis patients’ readiness to pursue live donor kidney transplantation. Nephrol Dial Transplant. 2009;24(4):1298–305.CrossRefPubMed Pradel FG, Suwannaprom P, Mullins CD, Sadler J, ST B. Haemodialysis patients’ readiness to pursue live donor kidney transplantation. Nephrol Dial Transplant. 2009;24(4):1298–305.CrossRefPubMed
31.
go back to reference Waterman AD, Peipert JD, Hyland SS, McCabe MS, Schenk EA. J. L. modifiable patient characteristics and racial disparities in evaluation completion and living donor transplant. Clin J Am Soc Nephrol. 2013;8(6):995–1002.CrossRefPubMedPubMedCentral Waterman AD, Peipert JD, Hyland SS, McCabe MS, Schenk EA. J. L. modifiable patient characteristics and racial disparities in evaluation completion and living donor transplant. Clin J Am Soc Nephrol. 2013;8(6):995–1002.CrossRefPubMedPubMedCentral
32.
go back to reference Mendelssohn DC, Curtis B, Yeates K, et al. Suboptimal initiation of dialysis with and without early referral to a nephrologist. Nephrol Dial Transplant. 2011;26(9):2959–65.CrossRefPubMed Mendelssohn DC, Curtis B, Yeates K, et al. Suboptimal initiation of dialysis with and without early referral to a nephrologist. Nephrol Dial Transplant. 2011;26(9):2959–65.CrossRefPubMed
33.
go back to reference Crews DC, Jaar BG, Plantinga LC, Kassem HS, Fink NE, Powe NR. Inpatient hemodialysis initiation: reasons, risk factors and outcomes. Nephron Clin Pract. 2009;114(1):c19–28.CrossRefPubMedPubMedCentral Crews DC, Jaar BG, Plantinga LC, Kassem HS, Fink NE, Powe NR. Inpatient hemodialysis initiation: reasons, risk factors and outcomes. Nephron Clin Pract. 2009;114(1):c19–28.CrossRefPubMedPubMedCentral
34.
go back to reference Buck J, Baker R, Cannaby AM, Nicholson S, Peters J, Warwick G. Why do patients known to renal services still undergo urgent dialysis initiation? A cross-sectional survey. Nephrol Dial Transplant. 2007;22(11):3240–5.CrossRefPubMed Buck J, Baker R, Cannaby AM, Nicholson S, Peters J, Warwick G. Why do patients known to renal services still undergo urgent dialysis initiation? A cross-sectional survey. Nephrol Dial Transplant. 2007;22(11):3240–5.CrossRefPubMed
35.
go back to reference Hughes SA, Mendelssohn JG, Tobe SW, McFarlane PA, Mendelssohn DC. Factors associated with suboptimal initiation of dialysis despite early nephrologist referral. Nephrol Dial Transplant. 2013;28(2):392–7.CrossRefPubMed Hughes SA, Mendelssohn JG, Tobe SW, McFarlane PA, Mendelssohn DC. Factors associated with suboptimal initiation of dialysis despite early nephrologist referral. Nephrol Dial Transplant. 2013;28(2):392–7.CrossRefPubMed
36.
go back to reference Salter ML, Kumar K, Law AH, et al. Perceptions about hemodialysis and transplantation among African American adults with end-stage renal disease: inferences from focus groups. BMC Nephrol. 2015;16:49.CrossRefPubMedPubMedCentral Salter ML, Kumar K, Law AH, et al. Perceptions about hemodialysis and transplantation among African American adults with end-stage renal disease: inferences from focus groups. BMC Nephrol. 2015;16:49.CrossRefPubMedPubMedCentral
37.
go back to reference Monson RS, Kemerley P, Walczak D, Benedetti E, Oberholzer J, Danielson KK. Disparities in completion rates of the medical prerenal transplant evaluation by race or ethnicity and gender. Transplantation. 2015;99(1):236–42.CrossRefPubMedPubMedCentral Monson RS, Kemerley P, Walczak D, Benedetti E, Oberholzer J, Danielson KK. Disparities in completion rates of the medical prerenal transplant evaluation by race or ethnicity and gender. Transplantation. 2015;99(1):236–42.CrossRefPubMedPubMedCentral
38.
go back to reference Munro S, Stacey D, Lewis KB, Bansback N. Choosing treatment and screening options congruent with values: Do decision aids help? Sub-analysis of a systematic review. Patient Educ Couns. 2016;99(4):491–500. Munro S, Stacey D, Lewis KB, Bansback N. Choosing treatment and screening options congruent with values: Do decision aids help? Sub-analysis of a systematic review. Patient Educ Couns. 2016;99(4):491–500.
39.
go back to reference Stacey D, Légaré F, Col NF, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2014;1:Cd001431. Stacey D, Légaré F, Col NF, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2014;1:Cd001431.
40.
go back to reference Rodrigue JR, Paek MJ, Egbuna O, et al. Making house calls increases living donor inquiries and evaluations for blacks on the kidney transplant waiting list. Transplantation. 2014;98(9):979–86.CrossRefPubMedPubMedCentral Rodrigue JR, Paek MJ, Egbuna O, et al. Making house calls increases living donor inquiries and evaluations for blacks on the kidney transplant waiting list. Transplantation. 2014;98(9):979–86.CrossRefPubMedPubMedCentral
41.
go back to reference Massey EK, Gregoor PJ, Nette RW, et al. Early home-based group education to support informed decision-making among patients with end-stage renal disease: a multi-Centre randomized controlled trial. Nephrol Dial Transplant. 2015; Massey EK, Gregoor PJ, Nette RW, et al. Early home-based group education to support informed decision-making among patients with end-stage renal disease: a multi-Centre randomized controlled trial. Nephrol Dial Transplant. 2015;
42.
go back to reference Boulware LE, Hill-Briggs F, Kraus ES, et al. Effectiveness of educational and social worker interventions to activate patients’ discussion and pursuit of preemptive living donor kidney transplantation: a randomized controlled trial. Am J Kidney Dis. 2013;61(3):476–86.CrossRefPubMed Boulware LE, Hill-Briggs F, Kraus ES, et al. Effectiveness of educational and social worker interventions to activate patients’ discussion and pursuit of preemptive living donor kidney transplantation: a randomized controlled trial. Am J Kidney Dis. 2013;61(3):476–86.CrossRefPubMed
43.
go back to reference Sullivan C, Leon JB, Sayre SS, et al. Impact of navigators on completion of steps in the kidney transplant process: a randomized, controlled trial. Clin J Am Soc Nephrol. 2012;7(10):1639–45.CrossRefPubMedPubMedCentral Sullivan C, Leon JB, Sayre SS, et al. Impact of navigators on completion of steps in the kidney transplant process: a randomized, controlled trial. Clin J Am Soc Nephrol. 2012;7(10):1639–45.CrossRefPubMedPubMedCentral
44.
go back to reference Boulware LE, Hill-Briggs F, Kraus ES, et al. Identifying and addressing barriers to African American and non-African American families’ discussions about preemptive living related kidney transplantation. Prog Transplant. 2011;21(2):97–104. quiz 105CrossRefPubMed Boulware LE, Hill-Briggs F, Kraus ES, et al. Identifying and addressing barriers to African American and non-African American families’ discussions about preemptive living related kidney transplantation. Prog Transplant. 2011;21(2):97–104. quiz 105CrossRefPubMed
47.
go back to reference Chilcot J, Moss-Morris R, Artom M, et al. Psychosocial and clinical correlates of fatigue in Haemodialysis patients: the importance of Patients’ illness cognitions and Behaviours. Int J Behav Med. 2016;23(3):271–81.CrossRefPubMed Chilcot J, Moss-Morris R, Artom M, et al. Psychosocial and clinical correlates of fatigue in Haemodialysis patients: the importance of Patients’ illness cognitions and Behaviours. Int J Behav Med. 2016;23(3):271–81.CrossRefPubMed
48.
go back to reference Wu AW, Fink NE, Marsh-Manzi JV, et al. Changes in quality of life during hemodialysis and peritoneal dialysis treatment: generic and disease specific measures. J Am Soc Nephrol. 2004;15(3):743–53.CrossRefPubMed Wu AW, Fink NE, Marsh-Manzi JV, et al. Changes in quality of life during hemodialysis and peritoneal dialysis treatment: generic and disease specific measures. J Am Soc Nephrol. 2004;15(3):743–53.CrossRefPubMed
49.
go back to reference Kimmel PL. Psychosocial factors in adult end-stage renal disease patients treated with hemodialysis: correlates and outcomes. Am J Kidney Dis. 2000;35(4 Suppl 1):S132–40.CrossRefPubMed Kimmel PL. Psychosocial factors in adult end-stage renal disease patients treated with hemodialysis: correlates and outcomes. Am J Kidney Dis. 2000;35(4 Suppl 1):S132–40.CrossRefPubMed
50.
go back to reference Kimmel PL, Peterson RA, Weihs KL, et al. Multiple measurements of depression predict mortality in a longitudinal study of chronic hemodialysis outpatients. Kidney Int. 2000;57(5):2093–8.CrossRefPubMed Kimmel PL, Peterson RA, Weihs KL, et al. Multiple measurements of depression predict mortality in a longitudinal study of chronic hemodialysis outpatients. Kidney Int. 2000;57(5):2093–8.CrossRefPubMed
51.
go back to reference Lai AY, Loh AP, Mooppil N, Krishnan DS, Griva K. Starting on haemodialysis: a qualitative study to explore the experience and needs of incident patients. Psychol Health Med. 2012;17(6):674–84.CrossRefPubMed Lai AY, Loh AP, Mooppil N, Krishnan DS, Griva K. Starting on haemodialysis: a qualitative study to explore the experience and needs of incident patients. Psychol Health Med. 2012;17(6):674–84.CrossRefPubMed
Metadata
Title
Effectiveness of informational decision aids and a live donor financial assistance program on pursuit of live kidney transplants in African American hemodialysis patients
Authors
L. Ebony Boulware
Patti L. Ephraim
Jessica Ameling
LaPricia Lewis-Boyer
Hamid Rabb
Raquel C. Greer
Deidra C. Crews
Bernard G. Jaar
Priscilla Auguste
Tanjala S. Purnell
Julio A. Lamprea-Monteleagre
Tope Olufade
Luis Gimenez
Courtney Cook
Tiffany Campbell
Ashley Woodall
Hema Ramamurthi
Cleomontina A. Davenport
Kingshuk Roy Choudhury
Matthew R. Weir
Donna S. Hanes
Nae-Yuh Wang
Helene Vilme
Neil R. Powe
Publication date
01-12-2018
Publisher
BioMed Central
Published in
BMC Nephrology / Issue 1/2018
Electronic ISSN: 1471-2369
DOI
https://doi.org/10.1186/s12882-018-0901-x

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