Adolescent and Young Adult Cancer Data in the Cancer Research Network

Background: Cancer is the leading cause of disease-related death among U.S. persons aged 15–39 years. Certain cancers are more common in this adolescent/young adult (AYA) population than in younger children or older adults. Research supported by initiatives like the Cancer Research Network (CRN) is needed to address late effects of cancer and its treatments among AYA survivors. The CRN consortium is funded by the National Cancer Institute to support cancer research at a subset of Health Care Systems Research Network sites. The data collected and maintained by CRN sites facilitate a variety of AYA cancer research opportunities. Methods: Counts and characteristics of primary malignant tumors diagnosed during 1996–2015 among health plan enrollees aged 15–39 were obtained from the Group Health virtual data warehouse. Descriptive analyses included counts of incident cases by selected demographic characteristics and cancer type. In early 2017, updated counts as well as postdiagnosis retention metrics will be obtained from Group Health and up to 11 additional CRN sites via a centrally developed Statistical Analysis System® program. Results: During 1996–2015, 1,982 AYA Group Health enrollees (18% adolescent, age 15–24; 82% young adult, age 25–39) were diagnosed with cancer. Females comprised 65% of total AYA diagnoses, although the disparity was less pronounced among adolescents (54% female) than young adults (67%). Whites accounted for 78% of all diagnoses, while Asians, blacks and Hispanics comprised 6.8%, 3.6% and 5.1% of diagnoses, respectively. Hodgkin lymphoma was the most commonly diagnosed cancer among adolescents (15% of diagnoses), while breast cancer was the most commonly diagnosed (19%) among young adults. Melanoma, thyroid cancer and testicular cancer were the second, third and fourth most commonly diagnosed malignancies among both adolescents and young adults. Conclusion: The CRN supports the infrastructure to maintain high-quality data on AYA cancer patients at eight funded and four affiliate sites. Additionally, the multisite CRN environment allows for the study of AYA cancers among a large, demographically diverse patient population. Thus, the CRN provides a setting that is well suited for research in what is potentially one of the largest AYA cancer cohorts with longitudinal data.