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Open Access Study protocol

The providing resources to enhance African American patients’ readiness to make decisions about kidney disease (PREPARED) study: protocol of a randomized controlled trial

Patti L Ephraim12, Neil R Powe3, Hamid Rabb4, Jessica Ameling15, Priscilla Auguste15, LaPricia Lewis-Boyer15, Raquel C Greer15, Deidra C Crews14, Tanjala S Purnell16, Bernard G Jaar147, Nicole DePasquale15 and L Ebony Boulware125*

Author Affiliations

1 Welch Center for Prevention, Epidemiology and Clinical Research, Johns Hopkins Medical Institutions

2 Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health

3 San Francisco General Hospital and University of California San Francisco

4 Division of Nephrology, Johns Hopkins Medical Institutions

5 Division of General Internal Medicine, Johns Hopkins University School of Medicine

6 Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health

7 Nephrology Center of Maryland

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BMC Nephrology 2012, 13:135  doi:10.1186/1471-2369-13-135

Published: 12 October 2012

Abstract

Background

Living related kidney transplantation (LRT) is underutilized, particularly among African Americans. The effectiveness of informational and financial interventions to enhance informed decision-making among African Americans with end stage renal disease (ESRD) and improve rates of LRT is unknown.

Methods/design

We report the protocol of the Providing Resources to Enhance African American Patients’ Readiness to Make Decisions about Kidney Disease (PREPARED) Study, a two-phase study utilizing qualitative and quantitative research methods to design and test the effectiveness of informational (focused on shared decision-making) and financial interventions to overcome barriers to pursuit of LRT among African American patients and their families. Study Phase I involved the evidence-based development of informational materials as well as a financial intervention to enhance African American patients’ and families’ proficiency in shared decision-making regarding LRT. In Study Phase 2, we are currently conducting a randomized controlled trial in which patients with new-onset ESRD receive 1) usual dialysis care by their nephrologists, 2) the informational intervention (educational video and handbook), or 3) the informational intervention in addition to the option of participating in a live kidney donor financial assistance program. The primary outcome of the randomized controlled trial will include patients’ self-reported rates of consideration of LRT (including family discussions of LRT, patient-physician discussions of LRT, and identification of a LRT donor).

Discussion

Results from the PREPARED study will provide needed evidence on ways to enhance the decision to pursue LRT among African American patients with ESRD.

Trial registration

ClinicalTrials.gov NCT01439516

Keywords:
Shared decision-making; Live kidney transplantation; Live kidney donation; Chronic kidney disease; End stage renal disease