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Randomized Controlled Trial
. 2018 May 3;19(1):107.
doi: 10.1186/s12882-018-0901-x.

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  1 , Patti L Ephraim  2   3 , Jessica Ameling  3   4 , LaPricia Lewis-Boyer  3   4 , Hamid Rabb  5   6 , Raquel C Greer  3   4 , Deidra C Crews  3   5 , Bernard G Jaar  3   4   5 , Priscilla Auguste  3   4 , Tanjala S Purnell  3   4   6 , Julio A Lamprea-Monteleagre  3   7 , Tope Olufade  2   3 , Luis Gimenez  5   8 , Courtney Cook  3   4 , Tiffany Campbell  3   4 , Ashley Woodall  3   4 , Hema Ramamurthi  3   4 , Cleomontina A Davenport  9 , Kingshuk Roy Choudhury  9 , Matthew R Weir  10 , Donna S Hanes  10 , Nae-Yuh Wang  2   3   4   11 , Helene Vilme  12 , Neil R Powe  13
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Randomized Controlled Trial

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 et al. BMC Nephrol. .

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.

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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
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References

    1. National Kidney Foundation. The Big Ask, The Big Give. https://www.kidney.org/transplantation/livingdonors. Accessed 27 June 2016.
    1. American Association of Kidney Patients. In Pursuit Of A Living Kidney Transplant: It’s About Your Donor Finding You! https://www.aakp.org/education/resourcelibrary/transplantation-resources.... Accessed 27 June 2016.
    1. National Kidney Foundation. NKF Peers. https://www.kidney.org/patients/peers. Accessed 27 June 2016.
    1. National Institute of Diabetes and Digestive and Kidney Diseases NIoH. http://grants.nih.gov/grants/guide/rfa-files/RFA-DK-12-006.html. 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.

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