(241) Pediatric cancer in the United States: a comparison of two data sources

Background: Pediatric cancer is rare, with 16,000 incident cases annually in the US. For every incident case of cancer in pediatrics, there are >100 incident cases in adults. Due to the rarity of pediatric cancers, few real-world (rw) data sources are available for research.

Objectives: To compare the relative strengths and limitations of two large, rw oncology data sources in the US to address research needs specific to pediatric cancer patients (pts).

Methods: We used data from the Surveillance, Epidemiology, and End Results (SEER)–17 registries, which encompass 26.5% of the US population and from the ConcertAI® (CAI) RWD360TM dataset, a rw dataset of >6 million pts from across the US from electronic health record systems. For each source, demographics, clinical characteristics, and survival were evaluated among children and adolescents (0-19 yrs) diagnosed between 2015-2020 (inclusive) with any of 3 common pediatric cancer types: acute lymphocytic leukemia (ALL), acute myeloid leukemia (AML), and central nervous system tumors (CNS-T). Descriptive statistics and Kaplan-Meier 1-year overall survival were calculated.

Results: Total diagnosed pediatric cases for ALL, AML, and CNS-T were 4,886; 1,249; and 4,016 from SEER and 370; 62; and 335 from CAI, respectively. Higher proportions of younger children (0-4 yrs) were observed in SEER (31-44%) vs CAI (17-31%). 16 to 22% of CAI pts had unknown/other information on race. Compared to SEER, CAI included a lower proportion of Asian pts (3-5% vs 8-13%) and a similar proportion of Black pts (6-21% vs 7-15%). Geographic location by US Census regions also varied with overrepresentation of the West in SEER (60%) and Midwest in CAI (31%) and underrepresentation of the Midwest in SEER (4%) and Northeast in CAI (11%). While both data sources include cancer stage at diagnosis (dx), CAI, allows for greater clinical characterization of baseline comorbidities and longitudinal assessment of treatment regimens. Survival at 1-yr from dx for ALL, AML, and CNS-T was 95.6% (95% CI: 94.9-96.1%), 81.6% (79.2-83.7%), and 87.1% (85.9, 88.1%) in SEER, and 97.8% (95.6-98.9%), 91.8% (81.5-96.5%), and 94.2% (91.1-96.3%) in CAI, respectively. In SEER, ALL pts had progressively worse survival as age group at dx increased (p-trend < 0.01).

Conclusions: SEER-17 captured more than ten times as many diagnosed cases as CAI in each of the 3 pediatric cancers of interest. Although the depth of clinical data available from CAI was greater, patient race and ethnicity were not always available. Across the two sources, 1-yr survival was higher for all cancers in CAI compared to SEER. Choice of data source may be determined by the specific research question of interest including the need for relatively large patient numbers versus in-depth clinical/treatment information.