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

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, 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

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].

Keywords: Decision aid; End stage renal disease; Financial support; Live donor kidney transplant; Race disparities.

Conflict of interest statement

Ethics approval and consent to participate

Informed written consent was obtained from all human subjects who participated in the study. This study was performed in accordance with the Declaration of Helsinki. The Johns Hopkins School of Medicine Institutional Review Board approved all protocols and consent procedures [NA_00011846]. The Duke University School of Medicine Institutional Review Board approved all data analysis procedures [Pro00053328].

Competing interests

Dr. Weir reports personal fees from Relypsa, personal fees from ZS Pharma, during the conduct of the study; personal fees from Akebia, personal fees from Janssen, personal fees from AstraZeneca, personal fees from Amgen, personal fees from MSD, personal fees from AbbVie, personal fees from Novartis, personal fees from Boston Scientific, personal fees from Sandoz, outside the submitted work.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Figures

Fig. 1
Fig. 1
CONSORT Flow Diagram for study eligibility, screening, consent, enrollment, randomization, and follow-up. *Reasons for ineligibility included deceased at time of contact (n = 6), previous kidney transplant (n = 14), in nursing home or hospice (n = 8), medically unstable (n = 22), Non-African American (n = 18), receiving hemodialysis for longer than the 1–2 year (n = 1), no longer on hemodialysis or recovered their kidney function (n = 4), need for proxy (N = 3), switched dialysis treatment center at the time of contact (n = 9), and other (n = 2). **BL = Baseline
Fig. 2
Fig. 2
Unadjusted observed proportion (Panel a) and adjusted (for participants’ baseline comorbidity scores) predicted probability (Panel b) of participants achieving 1 additional live donor kidney transplantation behaviors at 1, 3 and 6 months. In longitudinal GEE analyses, the Odds Ratio (95% CI) for an individual participant achieving at least 1 new behavior over 6 months was 1.53 (0.17, 13.45), 0.15 (0, 5.22), and 1.0 (0.22, 4.68), for participants in the usual care, PREPARED, and PREPARED Plus groups, respectively (p = 0.66 in test for global differences across groups in the adjusted analysis)
Fig. 3
Fig. 3
Proportion of participants stating they thought a transplant would help them feel better on a day-to-day basis (panel a), help them live longer (panel b), cost more money out of pocket than other treatments (panel c), or require more day-to-day help from family (panel d) at baseline, 1, 3, and 6 months follow up. In generalized estimating equation models, individuals’ beliefs did not statistically significantly change during the study and there were no statistically significant differences between study groups

References

    1. National Kidney Foundation. The Big Ask, The Big Give. . Accessed 27 June 2016.
    1. American Association of Kidney Patients. In Pursuit Of A Living Kidney Transplant: It’s About Your Donor Finding You! . Accessed 27 June 2016.
    1. National Kidney Foundation. NKF Peers. . Accessed 27 June 2016.
    1. National Institute of Diabetes and Digestive and Kidney Diseases NIoH. . Accessed 27 June 2016, 2016.
    1. United States Department of Health and Human Services . Social and behavioral interventions to increase organ donation grant program. 2016.
    1. Organ Procurement and Transplantation Network . National Data: living organ specific donors by donor ethnicity, January 1, 1988 - May 31, 2016. 2016.
    1. 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):1124–1133. doi: 10.1111/j.1600-6143.2009.02620.x.
    1. United States Renal Data System . Annual data report, 2016, chapter 7: transplantation. 2016.
    1. 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):1661–1669. doi: 10.1056/NEJM199911253412206.
    1. 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):1178–1184. doi: 10.1038/ki.2008.376.
    1. 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):876–881. doi: 10.1097/01.tp.0000232693.69773.42.
    1. 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):234–240. doi: 10.1177/152692480701700312.
    1. 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):244–251. doi: 10.1053/j.ackd.2012.01.008.
    1. 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):2142–2147.
    1. 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):1121–1130. doi: 10.1111/ctr.12428.
    1. 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):2774–2785. doi: 10.1111/j.1600-6143.2006.01532.x.
    1. 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):1659–1669. doi: 10.2215/CJN.00950115.
    1. 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):1687–1695. doi: 10.2215/CJN.00700115.
    1. National Living Donor Assistance Center. Living Donor Assistance Program. . Accessed 9 Aug 2014.
    1. 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. doi: 10.1186/1471-2369-13-135.
    1. 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):1451–1454. doi: 10.1046/j.1532-5415.2003.51465.x.
    1. 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. doi: 10.1186/1472-6947-12-140.
    1. 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):137–141. doi: 10.1016/S0002-9378(13)70294-1.
    1. Smilkstein G. The family APGAR: a proposal for a family function test and its use by physicians. J Fam Pract. 1978;6(6):1231–1239.
    1. 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.
    1. 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):1234–1240. doi: 10.1016/j.jclinepi.2008.01.006.
    1. 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):163–173. doi: 10.1016/j.jad.2008.06.026.
    1. 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):753–760. doi: 10.1053/j.ajkd.2014.04.021.
    1. 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.
    1. 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):1298–1305. doi: 10.1093/ndt/gfn733.
    1. 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. doi: 10.2215/CJN.08880812.
    1. 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):2959–2965. doi: 10.1093/ndt/gfq843.
    1. 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–c28. doi: 10.1159/000245066.
    1. 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):3240–3245. doi: 10.1093/ndt/gfm387.
    1. 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):392–397. doi: 10.1093/ndt/gfs431.
    1. 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. doi: 10.1186/s12882-015-0045-1.
    1. 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):236–242. doi: 10.1097/TP.0000000000000271.
    1. 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.
    1. 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.
    1. 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):979–986. doi: 10.1097/TP.0000000000000165.
    1. 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;
    1. 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):476–486. doi: 10.1053/j.ajkd.2012.08.039.
    1. 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):1639–1645. doi: 10.2215/CJN.11731111.
    1. 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. doi: 10.1177/152692481102100203.
    1. Institute of Medicine (US) Committee . Envisioning the National Health Care Quality Report. 2001.
    1. Institute of Medicine (IOM) Crossing the quality chasm: a new health system for the 21st century. 2001.
    1. 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):271–281. doi: 10.1007/s12529-015-9525-8.
    1. 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):743–753. doi: 10.1097/.
    1. 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–S140. doi: 10.1016/S0272-6386(00)70240-X.
    1. 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):2093–2098. doi: 10.1046/j.1523-1755.2000.00059.x.
    1. 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):674–684. doi: 10.1080/13548506.2012.658819.

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