title: Knowledge of Clinical Trial Availability and Reasons for Nonparticipation Among Adolescent and Young Adult Cancer Patients: A Population-based Study.
abstract: Adolescent and young adult (AYA) cancer patients are underrepresented in clinical trials, but the reasons for this phenomenon are unknown.
  
  
  
  Questionnaire and medical record data from 515 AYA cancer patients (21 acute lymphocytic leukemia [ALL], 201 germ cell tumor, 141 Hodgkin lymphoma, 128 non-Hodgkin lymphoma, 24 sarcoma) from a population-based study were analyzed. We used multivariable models to determine characteristics associated with patient knowledge of the availability of clinical trials for their cancer. Reasons for not participating in a trial were tabulated.
  
  
  
  In total, 63% of patients reported not knowing whether a relevant clinical trial was available, 20% reported knowing that a clinical trial was not available, and 17% reported that a trial was available. Among patients reporting an available trial, 67% were recommended for enrollment. Knowing about the availability of clinical trials was associated with having ALL (odds ratio=2.9, 95% confidence interval=1.1, 7.8). Reporting that a clinical trial was available was positively associated with having ALL, Hodgkin lymphoma, non-Hodgkin lymphoma and sarcoma (relative to germ cell tumor) and working full-time or in school full-time (odds ratio=2.6, 95% confidence interval=1.0, 6.7). Concerns about involvement in research (57%) and problems accessing trials (21%) were the primary reasons cited for not enrolling among patients who knew that a trial was available.
  
  
  
  Improvement in AYA cancer patient clinical trial enrollment will require enhancing knowledge about trial availability and addressing this population's concerns about participating in medical research.
authors.affiliation: Department of Urology, Division of Pediatric Urology, University of Washington, Seattle Children's Hospital.|Epidemiology Program, Fred Hutchinson Cancer Research Center, Seattle, WA.
authors.forename: Margarett
authors.initials: M
authors.lastname: Shnorhavorian
authors.affiliation: Epidemiology Program, Fred Hutchinson Cancer Research Center, Seattle, WA.
authors.forename: David R
authors.initials: DR
authors.lastname: Doody
authors.affiliation: Epidemiology Program, School of Public Health, Louisiana State University Health Sciences Center, New Orleans, LA.
authors.forename: Vivien W
authors.initials: VW
authors.lastname: Chen
authors.affiliation: Keck School of Medicine, University of Southern California, Los Angeles.
authors.forename: Ann S
authors.initials: AS
authors.lastname: Hamilton
authors.affiliation: Departments of Oncology and Pathology, School of Medicine, Wayne State University, Detroit, MI.
authors.forename: Ikuko
authors.initials: I
authors.lastname: Kato
authors.affiliation: Department of Public Health Sciences, School of Medicine, University of California, Davis, Davis, CA.
authors.forename: Rosemary D
authors.initials: RD
authors.lastname: Cress
authors.affiliation: Department of Epidemiology, University of Iowa, Iowa City, IA.
authors.forename: Michele
authors.initials: M
authors.lastname: West
authors.affiliation: Epidemiology Program, School of Public Health, Louisiana State University Health Sciences Center, New Orleans, LA.
authors.forename: Xiao-Cheng
authors.initials: XC
authors.lastname: Wu
authors.affiliation: Department of Internal Medicine, Division of Hematology and Oncology, School of Medicine, University of California, Davis, Sacramento, CA.
authors.forename: Theresa H M
authors.initials: THM
authors.lastname: Keegan
authors.affiliation: Applied Research Program, National Cancer Institute, Bethesda, MD.
authors.forename: Linda C
authors.initials: LC
authors.lastname: Harlan
authors.affiliation: Epidemiology Program, Fred Hutchinson Cancer Research Center, Seattle, WA.|Department of Epidemiology, University of Washington.
authors.forename: Stephen M
authors.initials: SM
authors.lastname: Schwartz
mesh_terms: D000293:Adolescent; D000328:Adult; D002986:Clinical Trials as Topic; D005260:Female; D005500:Follow-Up Studies; D007722:Health Knowledge, Attitudes, Practice; D006689:Hodgkin Disease / Q000453:epidemiology / Q000523:psychology / Q000628:therapy*; D006801:Humans; D008228:Lymphoma, Non-Hodgkin / Q000453:epidemiology / Q000523:psychology / Q000628:therapy*; D008297:Male; D009373:Neoplasms, Germ Cell and Embryonal / Q000453:epidemiology / Q000523:psychology / Q000628:therapy*; D010358:Patient Participation; D011379:Prognosis; D012107:Research Design; D012509:Sarcoma / Q000453:epidemiology / Q000523:psychology / Q000628:therapy*; D014481:United States / Q000453:epidemiology; D055815:Young Adult