Knowledge, Perceptions, and Barriers to Collection of Family Health History Data

Family health history (FHH) is used to assess potential risk for diseases such as hereditary cancers. To date, limited data exist on potential barriers to collecting FHH information.

We used National Center for Health Statistics Rapid Surveys System data collected between January-February 2024. The data were analyzed to estimate the prevalence of knowledge, perceptions, and barriers to collecting information on FHH. The final cumulative response rate ranged from 4.8%-4.4%.

Over 60% of adults had knowledge of the health history of their biological parents or grandparents. Nearly all adults (94.8%) believed that knowledge of FHH was somewhat or very important to their own health, though only 15.2% of adults reported actively collecting this information. An estimated 66.5% of adults reported that it was somewhat or very difficult to collect information about the health history of their biological relatives. Of these adults, the top two reasons for reported difficulty in collecting FHH were not being in contact with relatives/relatives no longer alive (76.0%) and not knowing what information to collect (45.9%). Differences in knowledge, perceptions, or barriers to collecting FHH were observed by several sociodemographic characteristics. Some of the biggest differences were observed for health insurance coverage; for example, 76.2% of adults with health insurance shared their FHH with a clinician compared to 46.1% of adults without health insurance.

This report provides national estimates that can guide intervention efforts to increase knowledge and collection of FHH and address common barriers to collecting this information.