Rare Cancer Prevalence in the SEER Population: Hepatobiliary Cancers,

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1 Rare Cancer Prevalence in the SEER Population: Hepatobiliary Cancers, NAACCR 2018 Annual Conference Andrea Ayers, MPH

2 Outline 1. Rare cancer classification 2. Hepatobiliary cancers 3. Key analytic findings!2

3 Rare Cancer Classification!3

4 Classification of Rare vs. Common Cancers Common definitions of rare diseases Orphan Drug Act, US FDA: <200,000 persons/year in US RARECARE Working Group: <6 cases/100,000 1 National Cancer Institute: <15 cases/100,000 2 Cancer classification Collaborative Stage (CS) schemas 150+ cancer classifications based on site/histology 1Executive Agency for Health and Consumers of the European Commission 2Epidemiology and Genomics Research Program, National Cancer Institute, 2007!4

5 Rare Cancer Schemas According to the definition of <15 cases/100,000 population: ~143 of the 153 CS schemas are rare Rare cancers represent on average ~30% of all cases diagnosed More than half of rare cancers have <1,000 cases annually 1 1SEER 18 Registries, 2016!5

6 Why Rare Cancers? Rare cancers are underrepresented in the literature Survivorship, healthcare burden not well understood SEER data offers a unique advantage to studying rare cancer trends Large, population-based cohort Many years of data available Prevalence calculations!6

7 Common Cancer Rates in the US, Rate (per 100,000 US population) Bladder Breast Colon Lung Lymphoma Melanoma Prostate CS Schema Data from SEER*Stat (SEER 18 Regs Nov 2017 Submission)!7

8 Rate (per 100,000 population) Common vs. Rare Cancer Rates in the US, Year of Diagnosis Data from SEER*Stat (SEER 18 Regs Nov 2017 Submission)!8

9 Hepatobiliary Cancers!9

10 Hepatobiliary Cancers by CS Schema Liver Intrahepatic bile duct Extrahepatic bile duct Gallbladder Ampulla of Vater!10

11 Hepatobiliary Cancers by CS Schema Rare occurring group of cancers in US Liver & intrahepatic bile duct cancers are 2.4% of all new cancer cases 1 Poor prognosis 45% of patients are diagnosed at regional or distant stage 1 5 year survival for all stages:17.7% 1 1SEER Cancer Statistics Review, 2018!11

12 Prevalence Analysis!12

13 Objectives To conduct a descriptive analysis of hepatobiliary cancer prevalence within the SEER population. To describe changes in prevalence over time overall and by sex, race, and cancer site.!13

14 Data Source Cases from SEER 9 Registries diagnosed Includes Atlanta, Connecticut, Detroit, Hawaii, Iowa, New Mexico, San Francisco-Oakland, Seattle-Puget Sound, & Utah Represents 9.4% of total US population Malignant hepatobiliary cases included Sex, race, & cancer site subgroups analyzed!14

15 Statistical Methods Limited-duration prevalence percents were calculated within SEER*Stat from Proportion of those alive with the diagnosis of interest within a specified duration of time Prevalence duration limited to 25 years Age-adjusted to 2000 US Standard Population!15

16 Statistical Methods, Continued Joinpoint regression was used to calculate: Annual percent change (APC) Average annual percent change (AAPC) Overall and by sex, race, & cancer site Regression models were log-transformed & based off prevalence percent!16

17 Trends, Overall & by Sex Figure 1. Overall Trends 1 Figure 2. Trends by Sex 1 Est. Prevalence % Est. Prevalence % Male Female Group AAPC (%) Overall 5.5* *Denotes that the AAPC is significantly different from zero (alpha = 0.05) Group AAPC (%) Male 6.3%* Female 4.1%*!17

18 Trends, Overall & by Race Figure 1. Overall Trends 1 Figure 3. Trends by Race 1 Est. Prevalence % Est. Prevalence % Other (AI/AN) Black White Group AAPC (%) Overall 5.5* *Denotes that the AAPC is significantly different from zero (alpha = 0.05) Group AAPC (%) White 5.3* Black 6.3* Other 4.4*!18

19 Trends, by Cancer Site Figure 4. Trends by Cancer Site 1 Site AAPC (%) Ampulla of Vater (AV) 0.9 Extrahepatic Bile Duct (EBD) 2.4* Intrahepatic Bile Duct (IBD) 4.6* Gallbladder 0.8* Est. Prevalence % Liver Gallbladder Liver 8.6* AV *Denotes that the AAPC is significantly different from zero (alpha = 0.05) EBD IBD!19

20 Summary of Findings Prevalence rates increased from in all subgroups measured Males and blacks had the highest AAPC compared to their counterparts (>6% change from ) Changes in liver cancer prevalence most likely driving increase in prevalence in other subgroups (i.e. sex, race) Highest number of cases in hepatobiliary group Increase in HBV, HCV infection rates, etc.!20

21 Conclusions Determine why prevalence is increasing: Longer survival Earlier diagnosis Improved treatment True increase in rates Increasing prevalence highlights need for further investigation into rare cancer types!21

22 Funding for this project was provided by the National Cancer Institute s Division of Cancer Control and Population Sciences. Acknowledgements Thank you to the following: Alison Van Dyke, MD, PhD Serban Negoita, MD, DrPH Angela Mariotto, PhD Meredith Shiels, PhD!22

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