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

Shnorhavorian, Margarett, MD*,†; Doody, David, R., MS; Chen, Vivien, W., PhD, MPH; Hamilton, Ann, S., PhD§; Kato, Ikuko, PhD; Cress, Rosemary, D., DrPH; West, Michele, PhD#; Wu, Xiao-Cheng, MD, MPH; Keegan, Theresa, H.M., PhD, MS**; Harlan, Linda, C., PhD, MPH††; Schwartz, Stephen, M., PhD, MPH†,‡‡the AYA HOPE Study Collaborative Group

American Journal of Clinical Oncology: June 2018 - Volume 41 - Issue 6 - p 581–587
doi: 10.1097/COC.0000000000000327
Original Articles: Pediatric

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.

*Department of Urology, Division of Pediatric Urology, University of Washington, Seattle Children’s Hospital

‡‡Department of Epidemiology, University of Washington

Epidemiology Program, Fred Hutchinson Cancer Research Center, Seattle, WA

Epidemiology Program, School of Public Health, Louisiana State University Health Sciences Center, New Orleans, LA

§Keck School of Medicine, University of Southern California, Los Angeles

Department of Public Health Sciences, School of Medicine, University of California, Davis, Davis, CA

**Department of Internal Medicine, Division of Hematology and Oncology, School of Medicine, University of California, Davis, Sacramento, CA

Departments of Oncology and Pathology, School of Medicine, Wayne State University, Detroit, MI

#Department of Epidemiology, University of Iowa, Iowa City, IA

††Applied Research Program, National Cancer Institute, Bethesda, MD

The AYA HOPE Study Collaborative Group: S.M.S., PhD (PI), Martha Shellenberger, and Tiffany Janes: Fred Hutchinson Cancer Research Center (Seattle, WA); Charles F. Lynch, MD, PhD (PI), M.M.W., PhD, and Lori A. Somers, RN: University of Iowa (Iowa City, IA); I.K., PhD (PI), Ann Bankowski, and Marjorie Stock: Wayne State University (Detroit, MI); R.D.C., DrPH (PI), Gretchen Agha, and Mark Cruz: Cancer Registry of Greater California/Public Health Institute (Sacramento, CA); X.-C.W., MD, MPH (PI), V.W.C., PhD, and Pinki K. Prasad, MD: Louisiana State University (New Orleans, LA); T.H.K., PhD, MS (PI): University of California, Davis (Davis, CA); Laura Allen, Zinnia Loya, Lisa Shelton-Herendeen: Cancer Prevention Institute of California (Fremont, CA); A.S.H., PhD (PI), Jennifer Zelaya; Urduja Trinidad: University of Southern California (Los Angeles, CA); L.C.H., BSN, MPH, PhD (PI), Ashley Wilder Smith, PhD, MPH (Co-PI); Gretchen Keel, BS, BA; Jana Eisenstein, MS: National Cancer Institute (Bethesda, MD); Arnold Potosky, PhD; Keith Bellizzi, PhD; Karen Albritton, MD; Michael Link, MD; Debra Friedman, MD; Brad Zebrack, PhD: Consultants.

Supported by NIH contracts (N01-PC-35136, N01-PC-35139, N01-PC-35142, N01-PC-35143, N01-PC-35145, N01-PC-54402, N01-PC-54404, N01-PC-75023) and an NIH training grant (K12HD053984).

The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Cancer Institute or the National Institutes of Health.

The authors declare no conflicts of interest.

Reprints: Stephen M. Schwartz, PhD, MPH, Epidemiology Program, Fred Hutchinson Cancer Research Center, 1100 Fairview Avenue N (M4-C308), Seattle, WA 98109. E-mail:

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