Advances in cancer detection, diagnosis, and treatment, along with the aging of the United States (US) population, have resulted in a large and growing number of cancer survivors. Recent estimates indicate that there are nearly 14 million cancer survivors in the US, more than the over 7 million cancer survivors reported in 1992 [
In 1992, the National Health Interview Survey (NHIS) examined characteristics of cancer survivors as part of its Cancer Control Supplement for the first time. Hewitt and colleagues published findings from the 1992 NHIS about numerous self-reported cancer survivor characteristics, including demographic information, cancer type, frequency of second opinion concerning type of cancer treatment, counseling and support group services, patient education, contact with cancer organizations, participation in clinical trials, health and life insurance coverage, and concerns with employment [
In 2010, NHIS again collected data on cancer survivors in order to examine demographic, diagnostic, treatment, and other healthcare characteristics of this growing population. In response to IOM and other reports advising tracking quality care and characteristic of survivors overtime, our study compares reported demographics, cancer diagnosis and treatment, psychosocial care, research participation, and insurance coverage between cancer survivors who responded to the 1992 NHIS and those who responded to the 2010 NHIS.
The NHIS is a population-based, cross-sectional household survey conducted annually by the Centers for Disease Control and Prevention (CDC), National Center for Health Statistics (NCHS), and administered by the US Census Bureau. Since 1957, the NHIS has collected data on civilian, noninstitutionalized US adults (aged 18 years or older) in order to examine healthcare status, access, and progress made towards improving health outcomes in the United States. Beginning in 1987, the NHIS began collecting data on cancer control and epidemiology. Over time, the NHIS has included various survey components. The 1992 NHIS survey consisted of a two-part questionnaire. The first part, or Core Section, consisted of a set of general health and demographic questions, while the second part, or supplement sections, contained more specific questions about health topics of interest. The 1992 NHIS survey incorporated two cancer supplements: the Cancer Control Supplement (CCS) and the Cancer Epidemiology Supplement (CES), both of which included questions on cancer survivorship (Cancer Survivorship Section).
These questions were administered, using a split survey design, to one randomly selected adult aged 18 years and older in each of the 49,401 households sampled. The administration of the Cancer Survivorship Section on each supplement was suspended during the third quarter of the field administration due to budgetary constraints, yielding an overall response rate of 87% for the CCS and an 86% response rate for the CES [
Similar to the 1992 NHIS survey, the 2010 NHIS administration was divided into two parts: the core and supplement sections. The CCS was fielded on the 2010 NHIS survey; however, several questions were revised since the 1992 administration. Topic areas covered in the current analysis and examined in both 1992 and 2010 included demographic characteristics (age, gender, race/ethnicity, marital status, education, and employment status and region), cancer history (number of cancers, cancer type, age at diagnosis and years since diagnosis, cancer treatments, and participation in cancer research studies or clinical trials), and healthcare characteristics (impact of cancer on insurance coverage and counseling and supportive group participation related to cancer). Demographic (age, race/ethnicity, marital status, education, and employment status) and cancer history (number of cancers, cancer type, age at diagnosis, and years since diagnosis) data were recoded for both 1992 and 2010 surveys. Reported age at the time of interview and at the time of diagnosis was recoded to reflect age distributions that are widely used age parameters for adolescents/young adults, middle adulthood, and older adulthood (18–29; 30–44; 45–54; 55–64; 65 and older). While data on racial and ethnic groups other than Non-Hispanic White, Non-Hispanic Black, and Hispanic were collected during survey administration, the sample sizes for these groups were too small for interpretation. Notably, data concerning cancer type was based on Surveillance Epidemiology and End Results (SEER) recodes of definitions for cancer sites from the International Classification of Diseases for Oncology, 3rd edition (ICD-O-3) [
For the purposes of the current analyses, we included all respondents who reported ever having been diagnosed with cancer (cancer survivors). Nonmelanoma skin cancers were excluded in both samples (1992 and 2010) as they are rarely invasive and are nearly always treated in a doctor’s office with no followup. In 1992, there were a total of 24,040 respondents to the NHIS, of whom 1553 (6.4%) reported ever having cancer. A total of 1018 (4.2%) respondents were included in the current analyses, excluding those who reported nonmelanoma skin cancers, skin cancers of unknown type, and unknown or ill-defined site (
We used descriptive statistics to examine differences in reported demographic, cancer history, and healthcare characteristics among cancer survivors who were respondents to the 1992 NHIS compared to those responding to the 2010 NHIS survey. In order to evaluate whether trends over time were unique to cancer survivors, additional descriptive analyses examining changes in demographics between the 1992 and 2010 NHIS surveys among respondents with no reported history of cancer were also conducted. In our analyses, we obtained parameter estimates by maximum likelihood techniques. To account for the complex survey design, SAS (SAS Institute, Cary, NC) version 9.2 and SAS-callable SUDAAN release 10 (Research Triangle Institute, Research Triangle Park, NC) were used to conduct all data analyses. Data were suppressed and considered statistically unreliable when the denominator was based on <50 sample cases or the Relative Standard Error (RSE) of the estimate was >30 percent [
The proportion of respondents who reported having a history of cancer (excluding nonmelanoma and noneligible site cancers) increased from 1992 to 2010 (4.2% versus 6.3%). In both years, most survivors were females, Non-Hispanic White, and not employed or in the labor force (Table
Demographic characteristics of cancer survivors, 1992 and 2010 NHIS.
Characteristic | 1992 cancer survivors | 2010 cancer survivors |
|
||
---|---|---|---|---|---|
|
% of total (95% confidence interval) |
|
% of total (95% confidence interval) | ||
Total | 1018 | 1718 | |||
Age at interview (years) | |||||
18–29 | 59 | 5.9 (4.4–7.8) | 58 | 3.6 (2.7–4.7) | <0.001 |
30–44 | 169 | 16.5 (14.2–19.1) | 171 | 9.4 (8.1–10.9) | |
45–54 | 118 | 12.9 (10.5–15.7) | 261 | 14.3 (12.7–16.1) | |
55–64 | 173 | 17.9 (15.3–20.7) | 392 | 22.6 (20.5–24.8) | |
65+ | 499 | 46.9 (43.3–50.5) | 836 | 50.1 (47.5–52.7) | |
Gender | |||||
Male | 278 | 31.4 (28.1–35.0) | 625 | 36.6 (34.2–39.1) | <0.001 |
Female | 740 | 68.6 (64.9–71.9) | 1093 | 63.4 (60.9–65.8) | |
Race/ethnicity | |||||
Non-Hispanic, White | 867 | 88.6 (86.2–90.6) | 1239 | 82.4 (80.6–84.0) | † |
Non-Hispanic, Black | 84 | 6.5 (5.1–8.4) | 245 | 9.1 (7.9–10.5) | |
Hispanic | * | * | 167 | 5.8 (4.9–6.9) | |
Other | * | * | 67 | 2.7 (2.0–3.6) | |
Marital status | |||||
Married | 510 | 65. 0 (61.9–68.0) | 766 | 44.6 (42.1–47.2) | † |
Unmarried | 505 | 35.0 (32.0–38.1) | 951 | 55.4 (52.8–57.9) | |
Education | |||||
<High school/high school/GED | 673 | 65.8 (62.1–69.2) | 768 | 43.4 (40.9–45.9) | † |
Some college | 186 | 18.3 (15.6–21.4) | 321 | 19.4 (17.3–21.8) | |
Associate degree/college grad/more | 156 | 15.9 (13.6–18.7) | 619 | 37.2 (34.5–40.0) | |
Employment status | |||||
Employed | 359 | 36.6 (33.4–40.0) | 576 | 34.1 (31.8–36.5) | † |
Not employed or not in labor force (18+) | 659 | 63.4 (60.0–66.6) | 1142 | 65.9 (63.5–68.2) | |
Region | |||||
Northeast | 187 | 18.7 (15.5–22.4) | 290 | 18.2 (16.0–20.7) | 0.817 |
Midwest | 279 | 27.4 (23.7–31.4) | 428 | 25.8 (23.7–28.0) | |
South | 345 | 34.6 (30.6–38.8) | 614 | 35.0 (32.6–37.5) | |
West | 207 | 19.4 (16.5–22.6) | 386 | 20.9 (18.7–23.4) |
Differences between 1992 and 2010 data were tested using chi-square tests.
†Statistical tests were not conducted where data were not reported consistently over time.
Subtotals presented do not equal actual totals because respondents with missing data for a particular characteristic are not included in distribution counts for that characteristic.
The age distributions of cancer survivors responding to the NHIS survey in 1992 and 2010 were significantly different (
Cancer diagnosis characteristics of survivors, 1992 and 2010 NHIS.
Characteristic | 1992 cancer survivors | 2010 cancer survivors |
| ||
---|---|---|---|---|---|
|
% of total (95% confidence interval) |
|
% of total (95% confidence interval) | ||
Total | 1018 | 100.00 | 1718 | 100.00 | |
How many types of cancer have you had | |||||
1 | 878 | 86.6 (83.9–88.9) | 1542 | 89.4 (87.8–90.8) | 0.05 |
2+ | 140 | 13.4 (11.1–16.1) | 176 | 10.6 (9.2–12.2) | |
Site or cancer type | |||||
Breast | 217 | 20.6 (17.7–23.8) | 393 | 22.9 (20.7–25.2) | † |
Cervical | 123 | 11.3 (9.2–13.7) | 154 | 8.8 (7.4–10.4) | |
Colorectal | 104 | 10.2 (7.9–12.9) | 140 | 8.0 (6.8–9.5) | |
Hematologic malignancies | * | * | 103 | 6.4 (5.2–7.9) | |
Lung and other respiratory system | * | * | 57 | 3.6 (2.7–4.7) | |
Other female genital system | 159 | 14.6 (12.3–17.3) | 123 | 7.3 (5.9–9.1) | |
Prostate | 78 | 8.9 (7.0–11.4) | 231 | 13.1 (11.7–14.7) | |
Skin (melanoma) | * | * | 142 | 9.5 (8.1–11.1) | |
Urinary system | * | * | 81 | 5.2 (4.0–6.6) | |
Other | 175 | 16.6 (14.3–19.2) | 254 | 15.3 (13.5–17.2) | |
Age at diagnosis of most recent cancer (years) | |||||
0–29 | 154 | 15.2 (12.8–17.9) | 221 | 12.9 (11.3–14.7) | 0.002 |
30–44 | 235 | 23.9 (21.2–26.9) | 318 | 18.2 (16.3–20.2) | |
45–54 | 142 | 14.5 (12.2–17.2) | 311 | 17.9 (16.0–19.8) | |
55–64 | 178 | 18.6 (15.7–21.8) | 395 | 22.8 (20.7–25.0) | |
65+ | 288 | 27.8 (24.7–31.2) | 458 | 28.3 (25.9–30.7) | |
Years since diagnosis of most recent cancer | |||||
<1 | * | * | 89 | 5.8 (4.6–7.2) | <0.001 |
1 to <5 | 388 | 40.8 (37.4–44.4) | 479 | 29.8 (27.4–32.3) | |
5 to <10 | 220 | 21.7 (18.9–24.8) | 350 | 21.8 (19.6–24.3) | |
10 to <15 | 127 | 12.2 (10.2–14.6) | 267 | 16.8 (14.9–18.9) | |
15 to <20 | 94 | 9.18 (7.3–11.5) | 132 | 8.2 (6.9–9.7) | |
20+ | 135 | 12.8 (10.6–15.3) | 273 | 17.6 (15.5–19.9) |
Differences between 1992 and 2010 data were tested using chi-square tests.
†Statistical tests were not conducted where data were not reported consistently over time.
Subtotals presented do not equal actual totals because respondents with missing data for a particular characteristic are not included in distribution counts for that characteristic.
The vast majority of cancer survivors in both 1992 and 2010 reported only having one type of cancer (86.6% (95% CI = 83.9–88.9) and 89.4% (95% CI = 87.8–90.8), resp.). There was a slight drop in reported rates of two or more cancer types among survivors from 1992 to 2010 (13.4% (95% CI = 11.1–16.1) versus 10.6% (95% CI = 9.2–12.2), resp.;
A drop in the proportion of survivors between the ages of 30 and 44 years at the time of their cancer diagnosis was observed from 1992 to 2010; however, an increase in survivors reporting having a cancer diagnosis between 55 and 64 years of age was found. Additionally, we found changes in years since cancer diagnosis, with a larger percentage of survivors in 2010 reporting that they were 10 to 14 years after diagnosis or over 20 years after diagnosis (Table
Health care characteristics of cancer survivors, 1992 and 2010 NHIS.
Characteristic | 1992 cancer survivors (dx <10 years ago) | 2010 cancer survivors (dx <10 years ago) |
|
2010 cancer survivors (dx ≥10 years ago) | |||
---|---|---|---|---|---|---|---|
|
% of total (95% confidence interval) |
|
% of total (95% confidence interval) |
|
% of total (95% confidence interval) | ||
Type of treatment for most recent cancer | |||||||
Any chemo | 134 | 20.5 (17.1–24.3) | 259 | 26.4 (23.6–29.4) | 0.072 | 150 | 24.7 (21.5–28.1) |
Any radiation | 159 | 24.5 (21.2–28.2) | 286 | 30.4 (27.2–33.8) | 0.373 | 135 | 21.6 (18.4–25.2) |
Any surgery | 445 | 68.5 (64.1–72.6) | 619 | 66.6 (63.3–69.7) | 0.108 | 456 | 74.5 (70.1–78.5) |
Other | 175 | 26.2 (22.2–30.7) | 157 | 17.1 (14.4–20.2) | † | 95 | 15.1 (12.2–18.5) |
Participate in a research study/clinical trials as part of cancer treatment | |||||||
Yes | * | * | 103 | 10.4 (8.5–12.8) | <0.001 | * | * |
No | 615 | 95.3 (92.8- 97.0) | 829 | 89.6 (87.2–91.5) | 564 | 92.4 (89.7–94.5) | |
Ever denied health or life insurance coverage because of cancer | |||||||
Yes | 63 | 10.9 (8.0–14.8) | 59 | 5.9 (4.6–7.7) | <0.001 | 54 | 8.9 (6.7–11.7) |
No | 580 | 89.1 (85.2–92.0) | 878 | 94.1 (92.4–95.4) | 558 | 91.1 (88.3–93.3) | |
After diagnosis did you receive any counseling or join support group | |||||||
Yes | 96 | 14.4 (11.6–17.6) | 147 | 14.1 (12.1–16.5) | 0.378 | 84 | 12.6 (10.0–15.6) |
No | 549 | 85.6 (82.4–88.4) | 791 | 85.9 (83.5–87.9) | 527 | 87.4 (84.4–89.9) | |
If you did not receive counseling, what was the reason | |||||||
I did not know it was available | 54 | 9.6 (6.9–13.1) | 117 | 13.6 (11.2–16.5) | <0.001 | 109 | 20.9 (17.4–24.9) |
I did not want it | 59 | 11.6 (8.4–15.8) | 182 | 24.5 (21.3–28.0) | 103 | 19.4 (16.0–23.4) | |
I did not think I needed it | 339 | 64.2 (59.1–69.0) | 389 | 50.7 (46.7–54.5) | 244 | 47.2 (42.7–51.8) | |
Other | 73 | 14.6 (11.2–18.8) | 94 | 11.2 (9.1–13.7) | 67 | 12.5 (9.9–15.5) | |
If you did not receive counseling, would you have been interested | |||||||
Yes | * | * | 54 | 42.9 (33.6–52.8) | 0.058 | * | * |
No | * | * | 59 | 57.1 (47.2–66.4) | 62 | 63.2 (52.6–72.7) |
Differences between 1992 and 2010 data were tested using chi-square tests.
†Statistical tests were not conducted where data were not reported consistently over time.
Subtotals presented do not equal actual totals because respondents with missing data for a particular characteristic are not included in distribution counts for that characteristic.
Differences were observed regarding types of treatments reported by survivors within 10 years of diagnosis in 1992 compared to survivors in 2010 (Table
In 2010, cancer survivors less than 10 years after diagnosis were significantly less likely to have health or life insurance coverage denied due to their cancer diagnosis compared to 1992 survey respondents who were less than 10 years after diagnosis, (
While the sample size for survivors (within <10 years of diagnosis in 1992 and 2010 survivors >10 years after diagnosis) who reported participation in clinical trials was too small for accurate interpretation, only 10.4% (95% CI = 8.5–12.8) of survivors in 2010 who were less than 10 years after diagnosis participated in clinical trials.
Approximately 85% of survivors in 1992 and 2010 reportedly did not receive counseling or participate in a support group, with the majority reporting they thought they did not need this service. While more than twice as many survivors in 2010, compared to those in 1992, reported that they did not participate in counseling or a support group because they “did not want it” (24.5% (95% CI = 21.3–28.0) versus 11.6% (95% CI = 8.4–15.8)), more survivors in 2010, particularly among those 10 years or more beyond diagnosis, reported that they “did not know” counseling and support group services were available to them (13.6% for <10 year survivors (95% CI = 11.2–16.5) and 20.9% for >10 year survivors (95% CI = 17.4–24.9), resp., versus 9.6% (95% CI = 6.9–13.1)). Among 2010 survivors diagnosed within the prior 10 years who reported that they did not participate in counseling or support groups, 43% reported that they would have been interested in receiving these services.
According to our results, the proportion of cancer survivors has increased over time, which is consistent with data from the Behavioral Risk Factor Surveillance Survey (BRFSS) [
The increase from 1992 to 2010 in the proportion of survivors who were men was not found in the general population of respondents with no history of cancer. While exact reasons for the gender difference among survivors are unknown, it is possible that this is a result of the trend toward earlier diagnosis and possible over diagnosis of prostate cancer [
The majority of cancer survivors in both 1992 and 2010 reported only having one type of cancer in their lifetime and breast cancer was most frequently the primary cancer type. Twenty-three percent of female cancer survivors in 2010 reported being breast cancer survivors, which is consistent with SEER estimates reported in 2008 [
Differences in the age at diagnosis between 1992 and 2010 were also evident. While there was an overall decline in proportion of cancer survivors under the age of 45 years at the time of diagnosis in 2010, the most pronounced decrease was among respondents aged 30 to 44 years. This reduction was largely a result of a significant decrease in other female gynecologic cancers in this age group (1992 NHIS = 26.0%; 2010 NHIS = 10.4%). Among those 45 years or older, an increase in cancer survivors was noted in the 2010 NHIS, with the largest increase being among adults aged 55–64 years at the time of diagnosis. This increase in 2010, compared to 1992, was largely due to substantially more reported prostate (22.3% versus 7.9%, resp.; data not shown) cancers diagnosed from ages 55–64 years.
While there are several factors affecting long-term survival for individuals diagnosed with cancer, early detection and advances in treatment and cancer related healthcare have been associated with long-term cancer survival [
According to the 1992 and 2010 NHIS surveys, use of surgical treatment was reported more than any other treatment by cancer survivors (Table
Clinical trials and research studies are needed for advances in treatment and quality care for cancer survivors. While the number of survivors in 1992 reporting involvement in clinical trials and research studies was too small for interpretation, previous researches looking at clinical trial and research study involvement in 1992 indicate that only 5% of survivors participated in such activities [
Our finding that fewer cancer survivors in 2010 reported being denied health or life insurance coverage is encouraging. Cancer survivors have traditionally reported difficulties getting approval for health and life insurance coverage due to preexisting condition clauses [
No significant changes from 1992 to 2010 were reported regarding participation in counseling or support groups among cancer survivors. Only 14% of cancer survivors in both 1992 and 2010 reported participation in counseling or support groups. But, consistent with other reports of low participation in these services [
Our study makes an important contribution to the current literature by comparing estimates of healthcare characteristics for cancer survivors responding to the NHIS survey before and after the release of several notable reports [
Limitations to our study include possible recall and differential misclassification biases, as well as the effects of differences in how respondents interpreted survey questions. Respondents who were very ill may have been less likely to participate in the survey. Further, these results are not generalizable to institutionalized individuals because they are not included in the NHIS sample frame. The NHIS data are adjusted to the civilian noninstitutionalized population through poststratification and weighting. While the sample of US adults surveyed was large, the smaller size of the subgroup of cancer survivors limits statistical power. Another limitation is possible self-reported misclassification of cancer type that would increase or reduce reported rates [
The characteristics of cancer survivors are changing over time, and understanding these changes is a first step in meeting the needs of this growing population. Fortunately, survivors are living longer after diagnosis, and the negative impact of cancer on insurance coverage has declined. However, opportunities exist to improve supportive services to survivors and to increase participation in clinical trials. We suggest that future studies of cancer survivors continue to examine the impact that demographic, as well as cancer and healthcare, characteristics play on survivorship outcomes, especially in the context of anticipated changes brought on healthcare legislation that are likely to affect the ways in which service delivery, insurance coverage, and overall healthcare are employed over time [
There are no financial disclosures or conflict of interests from any authors. All authors have read and approved the paper as well as any additional information that may impact the review process. This paper has not been previously accepted for publication by any other journal or publication source. The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention, the National Institutes of Health, or the Patient Centered Outcomes Research Institute. This original paper utilizes public use data, whose collection was funded by the Centers for Disease Control, the National Cancer Institute, and the National Center of Health Statistics.