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

the AYA HOPE Study Collaborative Group

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3 Citations (Scopus)

Abstract

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.

Original languageEnglish (US)
JournalAmerican Journal of Clinical Oncology: Cancer Clinical Trials
DOIs
StateAccepted/In press - Sep 15 2016

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Young Adult
Clinical Trials
Population
Precursor Cell Lymphoblastic Leukemia-Lymphoma
Neoplasms
Germ Cell and Embryonal Neoplasms
Hodgkin Disease
Sarcoma
Non-Hodgkin's Lymphoma
Odds Ratio
Confidence Intervals
Medical Records
Biomedical Research
Research

ASJC Scopus subject areas

  • Oncology
  • Cancer Research

Cite this

@article{e3978b0333184432ac3dac8296ae5749,
title = "Knowledge of Clinical Trial Availability and Reasons for Nonparticipation Among Adolescent and Young Adult Cancer Patients: A Population-based Study",
abstract = "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.",
author = "{the AYA HOPE Study Collaborative Group} and Margarett Shnorhavorian and Doody, {David R.} and Chen, {Vivien W.} and Hamilton, {Ann S.} and Ikuko Kato and Cress, {Rosemary D} and Michele West and Wu, {Xiao Cheng} and Keegan, {Theresa H} and Harlan, {Linda C.} and Schwartz, {Stephen M.}",
year = "2016",
month = "9",
day = "15",
doi = "10.1097/COC.0000000000000327",
language = "English (US)",
journal = "American Journal of Clinical Oncology",
issn = "0277-3732",
publisher = "Lippincott Williams and Wilkins",

}

TY - JOUR

T1 - Knowledge of Clinical Trial Availability and Reasons for Nonparticipation Among Adolescent and Young Adult Cancer Patients

T2 - A Population-based Study

AU - the AYA HOPE Study Collaborative Group

AU - Shnorhavorian, Margarett

AU - Doody, David R.

AU - Chen, Vivien W.

AU - Hamilton, Ann S.

AU - Kato, Ikuko

AU - Cress, Rosemary D

AU - West, Michele

AU - Wu, Xiao Cheng

AU - Keegan, Theresa H

AU - Harlan, Linda C.

AU - Schwartz, Stephen M.

PY - 2016/9/15

Y1 - 2016/9/15

N2 - 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.

AB - 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.

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U2 - 10.1097/COC.0000000000000327

DO - 10.1097/COC.0000000000000327

M3 - Article

C2 - 27635619

AN - SCOPUS:84987920226

JO - American Journal of Clinical Oncology

JF - American Journal of Clinical Oncology

SN - 0277-3732

ER -