Increased clinical trial enrollment among adolescent and young adult cancer patients between 2006 and 2012–2013 in the United States

Helen M. Parsons, Dolly C. Penn, Qian Li, Rosemary D. Cress, Brad H. Pollock, Marcio H. Malogolowkin, Ted Wun, Theresa H.M. Keegan

Research output: Contribution to journalArticlepeer-review

35 Scopus citations


BACKGROUND: Stagnant outcomes for adolescents and young adults (AYAs) 15-39 years of age with cancer are partly attributed to poor enrollment onto clinical trials. Initiatives have focused on increasing accrual, but changes at the population-level are unknown. We examined patterns of clinical trial participation over time in AYA patients with cancer.

PROCEDURE: We utilized medical record data from AYAs in two population-based National Cancer Institute Patterns of Care Studies identified through the Surveillance, Epidemiology and End Results Program. Among 3135 AYAs diagnosed with non-Hodgkin lymphoma (NHL), Hodgkin lymphoma, acute lymphoblastic leukemia (ALL), and sarcoma, we used multivariate logistic regression to evaluate patient and provider characteristics associated with clinical trial enrollment. Interaction terms evaluated variation in clinical trial enrollment across patient and provider characteristics by year of diagnosis.

RESULTS: From 2006 to 2012-2013, clinical trial participation increased from 14.8% to 17.9% (P < 0.01). Adjusting for patient and provider characteristics, we found lower clinical trial enrollment among those who were older at diagnosis, diagnosed with NHL vs ALL, treated by adult hematologist/oncologists only (vs pediatric hematologist/oncologists), and of non-Hispanic Black race/ethnicity (vs non-Hispanic White) (P < 0.05 for all). Interaction analyses indicate improved clinical trial enrollment from 2006 to 2012-2013 among young adults 25-29 years of age and the uninsured.

CONCLUSIONS: Although disparities in enrollment onto clinical trials remain for AYAs with cancer, our study identified increasing overall clinical trial participation over time. Further, we identify promising trends in enrollment uptake among AYAs 25-29 years of age and the uninsured.

Original languageEnglish (US)
Article numbere27426
JournalPediatric Blood and Cancer
Issue number1
StatePublished - Jan 2019

Bibliographical note

Publisher Copyright:
© 2018 Wiley Periodicals, Inc.


  • Adolescent
  • Adult
  • Cancer Care Facilities
  • Clinical Trials as Topic/statistics & numerical data
  • Female
  • Humans
  • Male
  • Neoplasms/epidemiology
  • Patient Participation/trends
  • Patient Selection
  • Research Subjects/statistics & numerical data
  • Time Factors
  • United States/epidemiology
  • Young Adult

PubMed: MeSH publication types

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


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