Reliance on self-reported health status information as a measure of population health can be challenging due to errors associated with participant recall. We sought to determine agreement between self-reported and registry-recorded site-specific cancer diagnoses in a cohort of Alaska Native people. We linked cancer history information from the Alaska Education and Research Towards Health (EARTH) cohort and the Alaska Native Tumor Registry (ANTR), and calculated validity measures (sensitivity, specificity, positive predictive value, negative predictive value, kappa). Multiple logistic regression models were used to assess independent associations of demographic variables with incorrect reporting. We found that among Alaska EARTH participants, 140 self-reported a history of cancer, and 99 matched the ANTR. Sensitivity ranged from 79% (colorectal cancer) to 100% (prostate cancer); specificity was over 98% for all-sites examined. Kappa was higher among prostate and female breast cancers (κ=0.86) than colorectal cancers (κ=0.63). Women (odds ratio [OR] (95% confidence interval [CI]): 2.8 (1.49–5.31)) and participants who were older than 50 years (OR (95% CI): 2.8 (1.53–4.12)) were more likely to report incorrectly. These data showed good agreement between self-reported and registry-recorded cancer history. This may be attributed to the high quality of care within the Alaska Tribal Health System, which strongly values patient-provider relationships and the provision of culturally appropriate care.

This study presents the first data on cancer survival among AN people in almost 2 decades. During this time, AN people have experienced improvements in survival from lung and colorectal cancers. The reasons for these improvements may include increased access to care (including screening) as well as improvements in treatment. Improving cancer survival should be a priority for reducing the burden of cancer among AN people and eliminating cancer disparities. Cancer 2018;124:2570-7. © 2018 American Cancer Society.

Like other Indigenous Circumpolar populations, Alaska Native (AN) people experience different patterns of cancer than their non-Indigenous counterparts. Every 5 years, the Alaska Native Tumour Registry releases a comprehensive report on cancer among AN people; this study provides 50 years of cancer surveillance data. Five-year annual-average age-adjusted incidence rates were calculated for time-periods ranging 1969–2018. AN data were compared with data for US whites (SEER 9). Mortality rates were calculated for 1994–2018 using data from the National Center for Health Statistics. During 2014–2018, there were 2,401 cases of invasive cancer among AN people. Among these, the most commonly diagnosed cancers were colorectal (405 cases, 17% of all cancers), lung and bronchus (373 cases, 16% of all cancers), and female breast (340 cases, 14% of all cancers). Lung cancer was the leading cause of cancer death, followed by colorectal and female breast cancers. These leading cancers are screenable, and preventable through lifestyle modifications including tobacco cessation, healthy eating and engaging in physical activity. These data provide important information to support cancer prevention and control among AN people. Cancer surveillance has been a valuable tool throughout the Circumpolar North to support reducing the burden of cancer among Indigenous populations. Abbreviations: ANAI: Alaska Native/American Indian; AN: Alaska Native; USW: U.S. White(s); ANMC: Alaska Native Medical Center; ANTR: Alaska Native Tumour Registry; IR: Incidence Rate; CI: Confidence Interval; RR: Rate Ratio; ICD-O-3: International Classification of Diseases for Oncology – Third Edition; SEER: Surveillance, Epidemiology and End Results.

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