Knowledge of Clinical Trial Availability and Reasons for Nonparticipation Among Adolescent and Young Adult Cancer Patients: A Population-based Study

Am J Clin Oncol. 2018 Jun;41(6):581-587. doi: 10.1097/COC.0000000000000327.


Purpose of the study: Adolescent and young adult (AYA) cancer patients are underrepresented in clinical trials, but the reasons for this phenomenon are unknown.

Patients and methods: 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.

Results: 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.

Conclusions: 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.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adolescent
  • Adult
  • Clinical Trials as Topic*
  • Female
  • Follow-Up Studies
  • Health Knowledge, Attitudes, Practice*
  • Hodgkin Disease / epidemiology
  • Hodgkin Disease / psychology
  • Hodgkin Disease / therapy*
  • Humans
  • Lymphoma, Non-Hodgkin / epidemiology
  • Lymphoma, Non-Hodgkin / psychology
  • Lymphoma, Non-Hodgkin / therapy*
  • Male
  • Neoplasms, Germ Cell and Embryonal / epidemiology
  • Neoplasms, Germ Cell and Embryonal / psychology
  • Neoplasms, Germ Cell and Embryonal / therapy*
  • Patient Participation*
  • Prognosis
  • Research Design
  • Sarcoma / epidemiology
  • Sarcoma / psychology
  • Sarcoma / therapy*
  • United States / epidemiology
  • Young Adult