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

Margarett Shnorhavorian; David R Doody; Vivien W Chen; Ann S Hamilton; Ikuko Kato; Rosemary D Cress; Michele West; Xiao-Cheng Wu; Theresa H M Keegan; Linda C Harlan; Stephen M Schwartz; AYA HOPE Study Collaborative Group

doi:10.1097/COC.0000000000000327

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

Journal article

Peer reviewed

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

Margarett Shnorhavorian, David R Doody, Vivien W Chen, Ann S Hamilton, Ikuko Kato, Rosemary D Cress, Michele West, Xiao-Cheng Wu, Theresa H M Keegan, Linda C Harlan, …

American journal of clinical oncology, Vol.41(6), pp.581-587

06/2018

DOI: 10.1097/COC.0000000000000327

PMCID: PMC8890672

PMID: 27635619

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https://www.ncbi.nlm.nih.gov/pmc/articles/8890672View

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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.

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

Details

Title: Subtitle: Knowledge of Clinical Trial Availability and Reasons for Nonparticipation Among Adolescent and Young Adult Cancer Patients: A Population-based Study
Creators: Margarett Shnorhavorian - Epidemiology Program, Fred Hutchinson Cancer Research Center, Seattle, WA
David R Doody - Epidemiology Program, Fred Hutchinson Cancer Research Center, Seattle, WA
Vivien W Chen - Epidemiology Program, School of Public Health, Louisiana State University Health Sciences Center, New Orleans, LA
Ann S Hamilton - Keck School of Medicine, University of Southern California, Los Angeles
Ikuko Kato - Departments of Oncology and Pathology, School of Medicine, Wayne State University, Detroit, MI
Rosemary D Cress - Department of Public Health Sciences, School of Medicine, University of California, Davis, Davis, CA
Michele West - Department of Epidemiology, University of Iowa, Iowa City, IA
Xiao-Cheng Wu - Epidemiology Program, School of Public Health, Louisiana State University Health Sciences Center, New Orleans, LA
Theresa H M Keegan - Department of Internal Medicine, Division of Hematology and Oncology, School of Medicine, University of California, Davis, Sacramento, CA
Linda C Harlan - Applied Research Program, National Cancer Institute, Bethesda, MD
Stephen M Schwartz - Department of Epidemiology, University of Washington
AYA HOPE Study Collaborative Group
Contributors: Charles F Lynch (Contributor) - University of Iowa, Epidemiology
Resource Type: Journal article
Publication Details: American journal of clinical oncology, Vol.41(6), pp.581-587
DOI: 10.1097/COC.0000000000000327
PMID: 27635619
PMCID: PMC8890672
NLM abbreviation: Am J Clin Oncol
ISSN: 0277-3732
eISSN: 1537-453X
Grant note: K12 HD053984 / NICHD NIH HHS
Language: English
Date published: 06/2018
Academic Unit: Epidemiology
Record Identifier: 9984214940002771

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