Open Access Research article

Selecting renal replacement therapies: what do African American and non-African American patients and their families think others should know? A mixed methods study

Nicole DePasquale12, Patti L Ephraim13, Jessica Ameling12, Lapricia Lewis-Boyér12, Deidra C Crews14, Raquel C Greer12, Hamid Rabb4, Neil R Powe56, Bernard G Jaar1478, Luis Gimenez478, Priscilla Auguste12, Mollie Jenckes2 and L Ebony Boulware123*

Author Affiliations

1 Welch Center for Prevention, Epidemiology and Clinical Research, Johns Hopkins Medical Institutions, Baltimore, MD, 21205, USA

2 Division of General Internal Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, 21205, USA

3 Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, 21205, USA

4 Division of Nephrology, Johns Hopkins Medical Institutions, 2024 E. Monument Street, Suite 2-600, Baltimore, MD, 21205, USA

5 University of California San Francisco, San Francisco, CA, 94110, USA

6 San Francisco General Hospital, San Francisco, CA, 94110, USA

7 Good Samaritan Hospital of Maryland, Baltimore, MD, 21239, USA

8 Nephrology Center of Maryland, Baltimore, MD, 21239, USA

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BMC Nephrology 2013, 14:9  doi:10.1186/1471-2369-14-9

Published: 14 January 2013

Abstract

Background

Little is known regarding the types of information African American and non-African American patients with chronic kidney disease (CKD) and their families need to inform renal replacement therapy (RRT) decisions.

Methods

In 20 structured group interviews, we elicited views of African American and non-African American patients with CKD and their families about factors that should be addressed in educational materials informing patients’ RRT selection decisions. We asked participants to select factors from a list and obtained their open-ended feedback.

Results

Ten groups of patients (5 African American, 5 non-African American; total 68 individuals) and ten groups of family members (5 African American, 5 non-African American; total 62 individuals) participated. Patients and families had a range (none to extensive) of experiences with various RRTs. Patients identified morbidity or mortality, autonomy, treatment delivery, and symptoms as important factors to address. Family members identified similar factors but also cited the effects of RRT decisions on patients’ psychological well-being and finances. Views of African American and non-African American participants were largely similar.

Conclusions

Educational resources addressing the influence of RRT selection on patients’ morbidity and mortality, autonomy, treatment delivery, and symptoms could help patients and their families select RRT options closely aligned with their values. Including information about the influence of RRT selection on patients’ personal relationships and finances could enhance resources’ cultural relevance for African Americans.

Keywords:
Decision-making; Renal replacement therapy; Family members; African American