title: A Model of Cancer Clinical Trial Decision-making Informed by African-American Cancer Patients.
abstract: BACKGROUND
  Clinical trials are critical to advancing cancer treatment. Minority populations are underrepresented among trial participants, and there is limited understanding of their decision-making process and key determinants of decision outcomes regarding trial participation.
  
  
  METHODS
  To understand research decision-making among clinical trial-eligible African-American cancer patients at Johns Hopkins, we conducted seven focus groups (n=32) with trial-offered patients ≥ 18 years diagnosed with lung, breast, prostate, or colorectal cancer ≤ 5 years. Three "acceptor" and four "decliner" focus groups were conducted. Questions addressed: attitudes towards clinical trials, reasons for accepting or declining participation, and recommendations to improve minority recruitment and enrollment. Data were transcribed and analyzed using traditional approaches to content and thematic analysis in NVivo 9.0. Data coding resulted in themes that supported model construction.
  
  
  RESULTS
  Participant experiences revealed the following themes when describing the decision-making process: Information gathering, Intrapersonal perspectives, and Interpersonal influences. Decision outcomes included the presence or absence of decision regret and satisfaction. From these themes, we generated a Model of Cancer Clinical Trial Decision-making.
  
  
  CONCLUSIONS
  Our model should be tested in hypothesis-driven research to elucidate factors and processes influencing decision balance and outcomes of trial-related decision-making. The model should also be tested in other disparities populations and for diagnoses other than cancer.
authors.affiliation: Johns Hopkins School of Nursing, 525 N. Wolfe St, Baltimore, MD 21205-2110, USA.
authors.forename: Jennifer A
authors.initials: JA
authors.lastname: Wenzel
authors.affiliation: Bloomberg School of Public Health, Baltimore, MD, USA.
authors.forename: Olive
authors.initials: O
authors.lastname: Mbah
authors.affiliation: Johns Hopkins School of Nursing, 525 N. Wolfe St, Baltimore, MD 21205-2110, USA.
authors.forename: Jiayun
authors.initials: J
authors.lastname: Xu
authors.affiliation: Johns Hopkins School of Nursing, 525 N. Wolfe St, Baltimore, MD 21205-2110, USA.
authors.forename: Gyasi
authors.initials: G
authors.lastname: Moscou-Jackson
authors.affiliation: Bloomberg School of Public Health, Baltimore, MD, USA.
authors.forename: Haneefa
authors.initials: H
authors.lastname: Saleem
authors.affiliation: Bloomberg School of Public Health, Baltimore, MD, USA.
authors.forename: Kwame
authors.initials: K
authors.lastname: Sakyi
authors.affiliation: Bloomberg School of Public Health, Baltimore, MD, USA.
authors.forename: Jean G
authors.initials: JG
authors.lastname: Ford
mesh_terms: D000328:Adult; D001741:Black or African American / Q000523:psychology* / Q000706:statistics & numerical data; D000368:Aged; D002986:Clinical Trials as Topic / Q000523:psychology* / Q000706:statistics & numerical data; D003657:Decision Making; D005260:Female; D017144:Focus Groups; D054624:Health Status Disparities; D006801:Humans; D008297:Male; D008875:Middle Aged; D008960:Models, Psychological; D009369:Neoplasms / Q000208:ethnology* / Q000628:therapy
keywords: African-Americans; Cancer disparities; Clinical trials; Decision balance; Decision regret