Rationale, Procedures, and Response Rates for a Pilot Study to Sample Cancer Survivors for NCI’s Health Information National Trends Survey: HINTS-SEER 2021
Kelly D. Blake, Richard P. Moser, Ashley B. Murray, Terisa Davis, David Cantor, Andrew Caporaso, Michele West, Suzanne Bentler, Meg McKinley, Salma Shariff‐Marco, Chuck Wiggins, Robin C. Vanderpool
Abstract
The National Cancer Institute’s (NCI) Health Information National Trends Survey (HINTS) is a nationally representative survey of U.S. adults in which 12–17% of respondents report a cancer history. To increase representation from adult cancer survivors, in 2021, NCI sampled survivors from three Surveillance, Epidemiology, and End Results (SEER) program cancer registries: Iowa, New Mexico, and the Greater Bay Area. Sampling frames were stratified by time since diagnosis and race/ethnicity, with nonmalignant tumors and non-melanoma skin cancers excluded. Participants completed a self-administered postal questionnaire. The overall response rate for HINTS-SEER (N = 1,234) was 12.6%; a non-response bias analysis indicated few demographic differences between respondents and the pool of sampled patients in each registry. Most of the sample was 10+ years since diagnosis (n = 722; 60.2%); 392 respondents were 5 to < 10 years since diagnosis (29.6%); and 120 were < 5 years since diagnosis (10.2%). Common cancers included male reproductive (n = 304; 24.6%), female breast (n = 284; 23.0%), melanoma (n = 119; 9.6%), and gastrointestinal (n = 106; 8.6%). Tumors were mostly localized (67.8%; n = 833), with 22.4% (n = 282) regional, 6.2% (n = 72) distant, and 3.7% (n = 47) unknown. HINTS-SEER data are available by request and may be used for secondary analyses to examine a range of social, behavioral, and healthcare outcomes among cancer survivors.