TY - JOUR
T1 - Selecting renal replacement therapies
T2 - what do African American and non-African American patients and their families think others should know? A mixed methods study.
AU - DePasquale, Nicole
AU - Ephraim, Patti L
AU - Ameling, Jessica
AU - Lewis-Boyér, Lapricia
AU - Crews, Deidra C.
AU - Greer, Raquel Charles
AU - Rabb, Hamid
AU - Powe, Neil R.
AU - Jaar, Bernard G.
AU - Gimenez, Luis
AU - Auguste, Priscilla
AU - Jenckes, Mollie
AU - Boulware, Leigh
N1 - Funding Information:
Support came from Grant #R01DK079682 from the National Institute of Diabetes and Digestive and Kidney Diseases (Drs. Boulware; Rabb; Powe), Grant #K23DK070757 from the National Center for Minority Health and Health Disparities and the National Institute of Diabetes and Digestive and Kidney Diseases (Dr. Boulware), Grant from the Harold Amos Faculty Development Program of the Robert Wood Johnson Foundation(Dr. Crews), Grant # 5KL2RR025006 from the National Center for Research Resources (NCRR), a component of the National Institutes of Health (NIH) and the NIH Roadmap for Medical Research (Dr. Greer), and Grant # 3R01DK079682-03S1 (Dr. Greer). The sponsor had no role in the study design; collection, analysis, or interpretation of the data. The sponsor also did not participate in writing the report or the decisions to submit the report for publication. The authors declare that they have no competing interests.
PY - 2013
Y1 - 2013
N2 - 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. 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. 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. 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.
AB - 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. 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. 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. 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.
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U2 - 10.1186/1471-2369-14-9
DO - 10.1186/1471-2369-14-9
M3 - Article
C2 - 23317336
AN - SCOPUS:84872127318
SN - 0309-1708
VL - 14
JO - Unknown Journal
JF - Unknown Journal
M1 - 9
ER -