Cancer prevalence and survivorship issues: analyses of the 1992 National Health Interview Survey.

Background/methods: Relatively little is known about the size and makeup of the growing population of cancer survivors or about the social implications of a diagnosis of cancer. To explore these issues, we analyzed cancer survivorship information from the 1992 National Health Interview Survey (NHIS), and resulting cancer prevalence estimates were compared with those derived from cancer registry data.

Results: According to the NHIS, there were an estimated 7.2 million adult survivors of cancer-excluding nonmelanoma skin cancer-in 1992, representing 3.9% of the U.S. adult population. Comparisons with prevalence estimates from cancer registry data suggest that cancer is underreported in the NHIS. Nearly three fifths (58.0%) of cancer survivors self-identified on the NHIS reported that their cancer was first detected when they noticed something wrong and went to a doctor. The majority (55.7%) of cancer survivors had obtained a second opinion or multiple opinions regarding their treatment. Most (58.0%) had received patient educational materials from a health care provider. However, relatively few had received counseling or participated in support groups (14.2%), contacted cancer organizations after their diagnosis (10.9%), or participated in a research study or clinical trial as part of their cancer treatment (4.7%). One ninth (10.7%) of the survivors had been denied health or life insurance coverage because of their cancer. Nearly one fifth (18.2%) of the cancer survivors who worked before or after their cancer was diagnosed experienced employment problems because of their cancer.

Conclusions: While cancer appears to be underreported on the 1992 NHIS, the survey provides valuable information about the medical, insurance, and employment experience of cancer survivors selected from a nationally representative sample of U.S. households.