African Americans are less likely than Whites to receive kidney transplants, despite their being more than two-fold as likely as Whites to develop end stage renal disease (ESRD). Living related kidney donation (LD) offers patients an opportunity to bypass many barriers to receipt of deceased kidney transplants (e.g. waiting lists and immunological incompatibility), but minorities are less likely to receive living related kidney transplants (LRT). Evidence suggests African Americans may not discuss LD/LRT with their families or physicians at optimal rates, and thus may not have adequate information to initiate or participate in shared decision-making regarding LD/LRT. African Americans may also have financial concerns regarding convalescence and out of pocket expenses related to LD/LRT, another barrier impeding LD/LRT. The primary goals of this study are to overcome these important barriers by enhancing ethnic minorities'consideration of LD/LRT through the promotion of shared decision-making regarding LD/LRT and provision of financial assistance for out of pocket expenses.
Our specific aims are: a) to develop culturally sensitive informational (audiovisual) and financial interventions and b) to perform a randomized controlled trial to assess their effectiveness in increasing pursuit of LD/LRT among African American patients with ESRD and their families. We will conduct focus groups to refine the content/delivery of the informational (audiovisual) intervention to promote patient and family shared-decision making and design a written brochure describing the financial assistance (for work loss, childcare and travel costs) intervention. We will enroll 210 adult African American patients with new-onset ESRD from 4 sites (9 dialysis facilities) in the Baltimore metropolitan area and measure their initial commitment to pursue LD/LRT (using the Transtheoretical Model for stages of behavior change). Participants will then be randomized to one of three groups: 1) informational incentive alone, 2) informational intervention plus financial assistance, and 3) no intervention (usual care). We will follow participants for up to 12 months for progression in their commitment to LD/LRT (precontemplation stage to contemplation stage to preparation stage to action stage to completion stage (receipt of LD/LRT)). If the interventions are successful in activating patients and their families to consider and undergo LD/LRT, we will disseminate them widely. Effective interventions to improve rates of LD/LRT in African Americans could help eliminate large disparities in receipt of organs for ESRD. The substantial experience of our team in the design and conduct of behavioral, epidemiologic and interventional studies related to donor/recipient health, minority health and kidney disease provides a strong foundation for this research.

Agency
National Institute of Health (NIH)
Institute
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Type
Research Project (R01)
Project #
5R01DK079682-05
Application #
8132858
Study Section
Special Emphasis Panel (ZDK1-GRB-R (M1))
Program Officer
Mcbryde, Kevin D
Project Start
2007-09-10
Project End
2013-07-31
Budget Start
2011-08-01
Budget End
2013-07-31
Support Year
5
Fiscal Year
2011
Total Cost
$224,468
Indirect Cost
Name
Johns Hopkins University
Department
Internal Medicine/Medicine
Type
Schools of Medicine
DUNS #
001910777
City
Baltimore
State
MD
Country
United States
Zip Code
21218
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Purnell, Tanjala S; Auguste, Priscilla; Crews, Deidra C et al. (2013) Comparison of life participation activities among adults treated by hemodialysis, peritoneal dialysis, and kidney transplantation: a systematic review. Am J Kidney Dis 62:953-73
DePasquale, Nicole; Ephraim, Patti L; Ameling, Jessica et al. (2013) Selecting renal replacement therapies: what do African American and non-African American patients and their families think others should know? A mixed methods study. BMC Nephrol 14:9
Ephraim, Patti L; Powe, Neil R; Rabb, Hamid et al. (2012) 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 13:135
Sheu, Johanna; Ephraim, Patti L; Powe, Neil R et al. (2012) African American and non-African American patients' and families' decision making about renal replacement therapies. Qual Health Res 22:997-1006
Purnell, Tanjala S; Hall, Yoshio N; Boulware, L Ebony (2012) Understanding and overcoming barriers to living kidney donation among racial and ethnic minorities in the United States. Adv Chronic Kidney Dis 19:244-51
Ameling, Jessica M; Auguste, Priscilla; Ephraim, Patti L et al. (2012) Development of a decision aid to inform patients' and families' renal replacement therapy selection decisions. BMC Med Inform Decis Mak 12:140
Greer, Raquel C; Crews, Deidra C; Boulware, L Ebony (2012) Challenges perceived by primary care providers to educating patients about chronic kidney disease. J Ren Care 38:174-81
Greer, Raquel C; Cooper, Lisa A; Crews, Deidra C et al. (2011) Quality of patient-physician discussions about CKD in primary care: a cross-sectional study. Am J Kidney Dis 57:583-91
Greer, Raquel C; Powe, Neil R; Jaar, Bernard G et al. (2011) Effect of primary care physicians' use of estimated glomerular filtration rate on the timing of their subspecialty referral decisions. BMC Nephrol 12:1

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