Affiliations of authors: M. Hewitt, Institute of Medicine, Washington, DC; N. Breen (Division of Cancer Control and Population Sciences), S. Devesa (Division of Cancer Epidemiology and Genetics), National Cancer Institute, Bethesda, MD.
Correspondence to: Maria Hewitt, Dr.P.H., Institute of Medicine, 2101 Constitution Ave., N.W., Washington, DC 20418 (e-mail: mhewitt{at}nas.edu).
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ABSTRACT |
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INTRODUCTION |
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METHODS |
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The NHIS is a principal source of information on the health of the U.S. noninstitutionalized,
civilian population (1). The NHIS is conducted by the National Center for
Health Statistics, Hyattsville, MD, and provides national data on the incidence of illness and
accidental injuries, the prevalence of chronic conditions and impairments, the extent of disability,
and the utilization of health care services. The 1992 NHIS included two cancer supplements, the
Cancer Control Supplement and the Cancer Epidemiology Supplement, each of which included a
Cancer Survivorship Section (2). In each of the 49 401
households selected for interviews, a sample adult respondent (18 years old) was selected to
complete the cancer survivorship questions. Because of budgetary constraints, cancer supplement
interviews were stopped during the third quarter of the field period, with 24 040 NHIS
respondents having completed the Cancer Survivorship Section. The overall response rates for the
Cancer Control and Cancer Epidemiology Supplements were 87% and 86%,
respectively.
For purposes of the NHIS, cancer survivors include respondents who reported ever having a diagnosis of cancer, regardless of whether they currently had symptoms of cancer. A total of 1553 respondents reported that a doctor had told them that they had cancer. These respondents were asked how many different kinds of cancer they had had, the types of cancer they had, when the first cancer was diagnosed and at what age, and how the cancer was first detected. When more than one cancer had been diagnosed, information on the most recently diagnosed cancer was also reported (i.e., type of cancer, year of diagnosis, and age at diagnosis). A total of 1519 respondents (98%) identified the kind of cancer they had. Excluding nonmelanoma skin cancer, there were 1020 cancer survivors identified. Of these, 656 individuals had been diagnosed with cancer in the last 10 years (either a primary or a subsequent cancer) and were asked to provide information on their experiences around the time of diagnosis and whether they had subsequent problems with insurance coverage and employment.
For the assessment of the validity of survey-reported cancer prevalence, national estimates of cancer prevalence were calculated on the basis of Connecticut Tumor Registry prevalence rates, age adjusted by sex to the 1992 U.S. population with the use of NHIS weights (adults only). In existence since 1935, the Connecticut Tumor Registry is the oldest population-based cancer registry in the United States and has sufficient length of follow-up of reported cases to generate accurate prevalence estimates (3). To make the registry-based estimates comparable to self-reported cancers, we included in situ diseases of the breast and cervix in the prevalence estimates [special tabulations prepared by David Annett, Information Management Services, Silver Spring, MD, October 1998; (3)].
Statistical Analyses
Descriptive statistics and logistic-regression models are presented to assess whether cancer survivors' characteristics are associated with six dichotomous outcomes of interest: receipt of a second opinion, receipt of counseling/participation in a support group, receipt of patient educational materials, contact with cancer organizations, participation in clinical research, and cancer-related problems in employment. The NHIS has a complex survey design involving stratification, clustering, and disproportionate sampling. All proportions and population counts presented are weighted to provide national estimates. Variance estimates for proportions and logistic-regression model odds ratios (ORs) were calculated by use of the Taylor series approximation technique, taking into account the complex design of the survey [Stata Statistical Software (4)]. All P values are two-sided; if less than .05, they are considered statistically significant.
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RESULTS |
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In 1992, an estimated 11 million Americans, or 6.1% of the total
adult population, had ever had cancer according to the NHIS. If skin
cancers other than melanoma are excluded, there were an estimated 7.2
million Americans with a history of a cancer diagnosis, representing
3.9% of the U.S. population (Table 1, A).
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Characteristics of Cancer Survivors
According to the 1992 NHIS, the leading types of self-reported
cancer among all cancer survivors are female reproductive cancers
(e.g., uterine, including cervical) (27.8%), female breast cancer
(20.4%), prostate and male reproductive organ cancers (9.5%), and
colorectal cancer (9.1%) (Table 2). Cancer
survivors are predominantly women (69.8%), and nearly half (46.2%)
are 65 years old or older. More than three quarters (76.4%) of cancer
survivors were first diagnosed with cancer at age 35 years or older;
the majority (52.4%) were diagnosed at ages 35-64 years. Most cancer
survivors (63.3%) have lived 5 or more years following their
diagnosis, and nearly one tenth (9.9%) have survived for more than 25
years. Racial and ethnic minority groups are underrepresented among
cancer survivors (11.7% of those with a history of cancer versus
22.6% of those without a history of cancer are Hispanic, Black, or
other race). This result suggests poorer survival but could also be
related to differential reporting or variation in incidence rates. More
than one third (36.5%) of cancer survivors rate their health as
excellent or very good. Fewer than one third (32.2%) of survivors rate
their health as fair or poor.
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Most individuals reporting cancer (58.0%) said that their cancer was first detected when they noticed something wrong and went to a doctor. Nearly one third (29.8%) had no symptoms and had the cancer detected during a routine checkup. The remaining 12.2% had their cancer detected in some other way. Cancers for which there are effective screening tests should be more likely to be detected through routine checkups than cancers without such tests. This appeared to be the case for cancers of the breast, cervix, and prostate but not for colorectal cancer.
Frequency of Second Opinion About Type of Treatment1
More than half (55.7%) of the individuals with cancer reported
obtaining a second or multiple opinions regarding their treatment
(Table 3). According to multivariate
analyses, characteristics associated with a statistically
significant greater use of second opinion include the
following (Table 4
):
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Residents of the Northeast had a statistically significant lower use of second opinions (OR = 0.5; 95% CI = 0.3-0.9).
Very few (13.1%) individuals with cancer reported seeing only their internist or general practitioner for their diagnosis and treatment.
Receipt of Counseling or Participation in Support Group
Relatively few persons (14.2%) reported receiving counseling or
joining a support group following their diagnosis (Table 3). Among
those who did not receive counseling, most (64.1%) felt that they did
not need it, 11.8% did not want it, and 9.4% did not know that it was
available. Another 14.7% said that they did not get counseling for
some other reason. Individuals with breast cancer were statistically
significantly more likely than those with other cancers to have
received counseling or to have participated in a support group (OR =
2.4; 95% CI = 1.0-5.6; P = .047) (Table 4
).
Those diagnosed with cancer recently were more than twice as likely than those
diagnosed 5 or more years ago to have reported receiving counseling or
joining a support group (OR = 2.6; 95% CI = 1.4-4.7) (Table 4
).
Patient Education
More than half (58.0%) of those with cancer reported having
received written information about their cancer or its treatment from a
doctor, nurse, or social worker (Table 3). Another 7.0% did not
get written information from a provider but did pick the materials up
themselves. Approximately one third of cancer survivors (35.0%)
reported not having received written patient information materials.
According to multivariate analyses, individuals with breast cancer
relative to those with other cancers (OR = 2.5; 95% CI = 1.3-4.9) and
those under age 65 years relative to older individuals (<35 years of
age, OR = 3.9 [95% CI = 2.0-7.6]; 35-64 years of age, OR
= 2.6
[95% CI = 1.5-4.4]) were more than twice as likely to have received
materials from their health care provider. Those diagnosed with cancer
recently were more likely than those diagnosed 5 or more years ago to
have received written information (OR = 1.8 [95% CI =
1.2-2.9])
(Table 4
).
Almost everyone (93.6%) who obtained written materials reported that the materials were helpful. The topics covered in the materials received included the following (respondents could choose more than one category):
Contact With Cancer Organizations
Relatively few (10.9%) cancer survivors reported having contacted
cancer organizations, such as the National Cancer Institute or the
American Cancer Society, after their diagnosis (Table 3). Women
reporting cervical cancer compared with those reporting other cancers
were statistically significantly less likely to have made contact (OR =
0.1; 95% CI = 0.0-0.5), according to multivariate analyses (Table 4
).
Those diagnosed with cancer recently were much more likely than those
diagnosed with cancer 5 or more years ago to have made such contact (OR
= 2.6; 95% CI = 1.3-5.3).
Participation in Clinical Research
Very few cancer survivors (4.7%) reported participating in a
research study or in a clinical trial as a part of their cancer
treatment (Table 3). Therefore, the sample size was insufficient for
multivariate analyses.
Change in Health or Life Insurance Coverage Because of Cancer
Roughly one in nine (10.7%) cancer survivors reported having been denied health or life insurance coverage because of cancer. Relatively few individuals (6.8%) with private health insurance that paid for all or part of their cancer treatment reported that their health insurance changed because of cancer following their diagnosis. Insurance cost increases were reported by 4.9% of cancer survivors. Very few (1.8%) reported that they were asked to waive coverage of their cancer in order to get health insurance.
Cancer-Related Problems With Employment
Fewer than half (43.2%) of cancer survivors worked before their diagnosis was made. Nearly one quarter (24.0%) of cancer survivors were 65 years old or older at diagnosis, which may in part account for this relatively low level of employment. Individuals (n = 291) who worked immediately before or after their cancer was diagnosed but who were not self-employed were asked a series of questions about cancer-related employment problems. Nearly one in five (18.2%) of these cancer survivors reported at least one of the following problems: felt that they could not take a new job because of a change in insurance related to cancer (13.2%), felt that they could not change jobs because of cancer (7.8%), faced on-the-job problems from an employer or supervisor directly related to their cancer (4.5%), refrained from applying for a new job because they did not want their medical records made public (4.4%), or were fired or laid off from their job because of their cancer (3.7%).
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DISCUSSION |
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Several factors could account for the differences in survey- and registry-based estimates of cancer prevalence. Some degree of underascertainment of cancer by survey is expected because the NHIS includes only the noninstitutional household population. Individuals seriously ill with cancer might not be included in the NHIS because they reside in hospices, nursing homes, or hospitals. Others might have refused the interview because of their poor health.
The NHIS provides an estimate of cancer prevalence based on individuals' self-reports and, therefore, would be expected to be less accurate than cancer registries that rely on clinically documented cancer diagnoses. The NHIS relies on accounts of diagnoses that may have occurred 30 or more years ago; while a diagnosis of cancer is likely a very salient event, evidence from the survey research literature suggests that the accuracy of recall declines markedly with time (6,7). Misunderstanding of the survey question might also explain some of the underreporting. Individuals were asked to report whether a medical doctor had ever told them that they had cancer; however, some may have failed to report their history of cancer if they considered themselves cured of the disease. Others may not have reported cancer to shorten the NHIS interview and to avoid further questions. The reluctance to report socially undesirable behaviors and conditions in surveys has been well documented, and some may have failed to report cancer because of social stigma (7,8). Certain cancers that may be subject to stigma (e.g., colorectal cancer among men and women and lung cancer among men) were prone to underreporting. A similar pattern of underreporting by cancer site was evident in analyses of the 1987 NHIS (5).
Whatever the mechanism, underascertainment or underreporting appears to be mainly a problem among men. To the extent that there may be a geographic variation in cancer incidence or survival rates, the U.S. sample may differ from the population represented in the Connecticut registry. However, geographic variation in cancer incidence does not explain the difference in prevalence as ascertained by survey and registry. During 1990 through 1994, the total cancer incidence rate in Connecticut was lower than that for the nation for males but not for females (9).
Other cancers (e.g., female genital cancers) were overreported. This overreporting could be explained if some women confused positive screening tests with a diagnosis of cancer. There is evidence of misreporting cancer site, especially among women. This could be explained in part if individuals with recurrent cancer reported the site of a recurrent cancer when they were asked about the site of cancer that was first diagnosed.
Long-term cancer survivors are likely to be those who were diagnosed at an early stage of the disease and who experienced successful treatment. According to the 1992 NHIS, most cancer survivors have lived 5 or more years following their diagnosis and more than one third rated their health as excellent or good. Even though cancer survivors may not be similar to all who have undergone treatment for cancer, it is of interest to assess aspects of their care experience.
The majority of cancer survivors (diagnosed within the last 10 years) had received a second or multiple opinions regarding their treatment. Widely publicized treatment options for breast cancer may account for higher rates of second opinions among women diagnosed with breast cancer. Hispanics are less likely to have health insurance and other resources to pay for care; therefore, it is surprising to find a threefold greater likelihood of use of a second opinion among Hispanics. Health insurance status at the time of diagnosis is likely a strong predictor of use of a second opinion, but this variable was not available for analysis. Perhaps the practice of seeking opinions from different doctors was not well understood (e.g., the question asked whether more than one opinion was sought, without specifying that it was the opinions of the doctors that were germane).
Cancer patients may have multiple treatment options to consider. Educational materials can provide information about cancer, its treatment, and community resources available to aid individuals and their families. Nearly 60% of cancer survivors were given written patient information materials by their providers. Being under age 65 years at diagnosis was predictive of receipt of educational materials. It is not clear whether providers are more likely to give information to younger patients or whether younger patients are more likely to request information (or perhaps recall receiving information). Other research (10) suggests that seeking information from doctors and nurses declines with age. Cancer organizations, such as the American Cancer Society and the National Cancer Institute, offer a wealth of information; however, according to the NHIS, they appear to be underutilized, with only 11% of cancer survivors contacting them following their diagnosis.
Cancer takes a psychologic as well as a physical toll, and it is therefore surprising that fewer than 15% of cancer survivors had received counseling or had participated in support groups. Most survivors said that they did not need or desire counseling or support services, but nearly one in 10 who did not receive these services did not know that they were available. Other research also shows relatively low use of formal support groups. In a survey of individuals treated at cancer facilities throughout Texas, only 23% belonged to a support group. Most respondents had not been asked to join such a group (11).
Clinical trials and other research programs often provide the best possible care for patients with certain types of cancer. Only 5% of cancer survivors reported having participated in research studies. There are few recent estimates of involvement in cancer research to serve as a comparison, but about 2% of adult cancer patients enroll in National Cancer Institute-sponsored cooperative group clinical trials (12). Patients may also participate in other government-sponsored (e.g., Department of Defense or Department of Veterans Affairs) or privately sponsored (e.g., pharmaceutical or biotechnology companies) cancer research.
A diagnosis of cancer can limit access to health and life insurance because of pre-existing condition clauses in policies. Furthermore, individuals with private health insurance coverage can experience premium rate increases or can be dropped from plans. The U.S. Congress tried to remedy this problem in 1996, enacting the Health Insurance Portability and Accountability Act (Kennedy-Kassebaum Act) to improve the portability and continuity of health insurance coverage in private insurance markets and among employer-sponsored group health plans. The Act limits the ability of insurers to deny or discontinue coverage because of pre-existing conditions such as cancer. The increased cost of the premiums for portable insurance products and difficulties in implementing the law, however, have limited the value of the new protections for consumers (13).
In 1992, roughly one in nine cancer survivors reported that they had been denied health or life insurance coverage because of cancer and just over one in 20 cancer survivors with private health insurance reported that their health insurance coverage changed because of cancer following their diagnosis.
Nearly one in five cancer survivors employed around the time of their diagnosis reported work-related problems stemming from their cancer diagnosis. Most of these related to "job-lock," an inability to change jobs because of a fear of loss of insurance coverage or medical privacy issues. This estimate is much lower than other surveys would suggest. In a 1992 survey of cancer patients treated at an acute-care, comprehensive cancer center in Houston, TX, the majority (58%) said that they would not leave their current position because of health insurance (14). This survey's focus was discrimination in employment, and those with problems may have been more likely to participate. Patients treated at the comprehensive cancer center may also have experienced more problems than those represented in the survey because they had more severe disease.
According to the 1992 NHIS, some cancer survivors experience workplace discrimination4% reported having been fired or laid off from their job because of their cancer, and 5% said that they faced on-the-job problems from their employer or supervisor directly related to their cancer. Discriminatory practices have been reported more often in other surveys (14,15).
In summary, the 1992 NHIS provides valuable information on the medical care experience and social implications of a diagnosis of cancer. While there appears to be some degree of underreporting of cancer relative to estimates from cancer registry data, the 1992 NHIS is one of the few sources of information about cancer survivorship from a nationally representative sample of U.S. households. Other information on cancer survivorship is forthcoming from two large studies being conducted by the American Cancer Society (16).
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NOTES |
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2 Noncentral city MSAs often include the "urban fringe" or suburban areas
outside the central cities.
The analysis, opinions and assertions contained herein are those of the author and are not to be construed as reflecting the views or position of the National Academy of Sciences, the Institute of Medicine, or the National Research Council.
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Manuscript received January 22, 1999; revised June 1, 1999; accepted July 2, 1999.
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