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C-C3-01: Adolescent and Young Adult Cancer Survivors in the Cancer Research Network

Background and Aims: Adolescents and young adults (AYA) with cancer face unique challenges related to their stage of physiological and psychosocial development, yet their diagnosis, treatment, and survivorship experiences remain poorly understood. To ascertain the CRN’s potential to address these issues, we examined the characteristics of and available follow-up time among AYA diagnosed with cancer at two CRN sites. Methods: Using the CRN’s Virtual Data Warehouse cancer registry files, we identified all individuals diagnosed with their first primary invasive cancer at ages 15 to 39 years from 1992 to 2007 at one site and 1996 to 2007 at the other. Next, we extracted demographic, vital status, and tumor data, categorizing tumor type using the combined childhood (ICCC) and adult (ICD-O3) classification approach from the SEER 2006 AYA cancer epidemiology report. We used administrative data to calculate post-cancer enrollment through September 2009. To address potential variations in enrollment patterns and pediatric to adult care transitions, we stratified the vital status and follow-up data into ages 15 to 24 years and 25 to 39 years. Results: We identified 7,121 AYA with incident cancer, of whom 4,424 (62%) were female and 2,820 (40%) were non-white. Common tumor types included breast (n=1,391, 20%); lymphoma (n=996, 14%); thyroid (n=858, 12%); genital (female, n=798, 11%; male, n=720, 10%); leukemia (n=327, 5%); and central nervous system (n=315, 4%). Among the 1,194 (17%) individuals diagnosed at ages 15 to 24 years, 955 (80%) were alive through the follow-up period; the median enrollment after diagnosis was 3.5 years (interquartile range [IQR] 1.5 to 6.6). Among the 5,927 (83%) individuals diagnosed at ages 25 to 39 years, 4,682 (79%) were alive through the follow-up period; the median enrollment after diagnosis was 4.2 years (IQR 1.7 to 8.0). Conclusions: Within two CRN sites we were able to identify a sizable, racially diverse group of AYA cancer survivors who remained enrolled and thus could be followed for several years after diagnosis. The CRN provides a unique setting in which to explore contemporary AYA cancer survivorship issues in the short-term, collect prospective long-term data, and test relevant interventions.