title: Selecting renal replacement therapies: what do African American and non-African American patients and their families think others should know? A mixed methods study.
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.
authors: Welch Center for Prevention, Epidemiology and Clinical Research, Johns Hopkins Medical Institutions, Baltimore, MD 21205, USA.
authors: Nicole
authors: N
authors: DePasquale
authors: Patti L
authors: PL
authors: Ephraim
authors: Jessica
authors: J
authors: Ameling
authors: Lapricia
authors: L
authors: Lewis-Boyér
authors: Deidra C
authors: DC
authors: Crews
authors: Raquel C
authors: RC
authors: Greer
authors: Hamid
authors: H
authors: Rabb
authors: Neil R
authors: NR
authors: Powe
authors: Bernard G
authors: BG
authors: Jaar
authors: Luis
authors: L
authors: Gimenez
authors: Priscilla
authors: P
authors: Auguste
authors: Mollie
authors: M
authors: Jenckes
authors: L Ebony
authors: LE
authors: Boulware
mesh_terms: D000293:Adolescent; D000328:Adult; D001741:Black or African American / Q000523:psychology / Q000706:statistics & numerical data*; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health / Q000208:ethnology*; D003657:Decision Making; D005190:Family / Q000208:ethnology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D010353:Patient Education as Topic / Q000706:statistics & numerical data*; D015995:Prevalence; D017582:Renal Replacement Therapy / Q000523:psychology / Q000706:statistics & numerical data*; D014481:United States / Q000453:epidemiology; D055815:Young Adult