Rationale, Procedures, and Response Rates for a Pilot Study to Sample Cancer Survivors for NCI’s Health Information National Trends Survey: HINTS-SEER 2021

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.

Acknowledgments

The authors gratefully acknowledge Steve Friedman, MHSA, Senior Advisor for Operations in the NCI Surveillance Research Program, for his contributions to the HINTS-SEER project and for his feedback on this manuscript. The authors also thank Alison Canchola for her review of the manuscript. The content of this publication does not necessarily reflect the views or policies of the Department of Health and Human Services, nor does the mention of trade names, commercial products, or organizations imply endorsement by the US government. The findings and conclusions in this report are those of the authors and may not necessarily represent NIH positions or policies.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

HINTS-SEER (2021) data are available by request by filling out a restricted-use data request form (https://hints.cancer.gov/data/restricted-data.aspx) and signing a Data Use Agreement.

Additional information

Funding

The HINTS-SEER data collection effort was funded by the U.S. National Cancer Institute via contract to Westat, Inc., HHSN261201800002B. Funding for the National Cancer Institute’s Surveillance, Epidemiology and End Results (SEER) registries is funded via separate contract mechanisms to the Greater Bay Area Cancer Registry, Iowa Cancer Registry, and New Mexico Tumor Registry.