The Journals of Gerontology Series A: Biological Sciences and Medical Sciences 58:M82-M91 (2003)
© 2003 The Gerontological Society of America
Cancer Survivors in the United States: Age, Health, and Disability
Maria Hewitt1,
Julia H. Rowland2 and
Rosemary Yancik3
1 National Cancer Policy Board, Institute of Medicine, Washington, District of Columbia.
2 Office of Cancer Survivorship, National Cancer Institute, National Institutes of Health, Bethesda, Maryland.
3 Geriatrics and Clinical Gerontology Program, National Institute on Aging, National Institutes of Health, Bethesda, Maryland.
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Abstract
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Background. Relatively little is known about the health and disability of adult cancer survivors. As a way to explore these issues, data from the National Health Interview Survey (years 1998–2000) were analyzed.
Methods. Comparisons were made between cancer survivors (n = 4878) and those without a history of cancer (n = 90,737), using both descriptive statistics and logistic-regression models on general health status, psychological disability, limitations in activities of daily living, physical function, and health-related ability to work. Among cancer survivors, health and disability status were assessed by cancer site or type, age at diagnosis, and years since cancer diagnosis.
Results. Compared with individuals without a history of cancer or other chronic disease, cancer survivors without other chronic diseases were significantly more likely to report being in fair or poor health (odds ratio, or OR, 2.97), a psychological disability (OR 2.18), limitations of activities of daily living or instrumental activities of daily living (OR 2.22), functional limitations (OR 1.74), and, among those under the age of 65, being unable to work because of a health condition (OR 3.22). The likelihood of poor health and disability was much higher among cancer survivors who also reported comorbid chronic conditions.
Conclusions. Providers caring for cancer survivors should be made aware of the long-term health consequences of cancer and consider appropriate supportive care for their patients. The identification of long-term effects of cancer that contribute to disability and the interventions needed to ameliorate these and their consequences should become a more prominent aspect of the research agenda.
RECENT estimates indicate that 8.9 million Americans have a history of cancer (1) (http://dccps.nci.nih.gov/ocs/). This number is expected to increase as the U.S. population ages and with continued improvements in early detection and treatment of cancer (2,3). The proportion of the population aged 65 years or older who are cancer survivors is already substantial; it is estimated at 16% as of 1997 (http://srab.cancer.gov/prevalence/index.html).
Cancer survival may be associated with short- and long-term morbidity secondary to the effects of cancer and its treatment. Survivors of breast cancer, for example, may experience chronic lymphedema, sexual dysfunction, and cognitive impairment (4–11). Survivors of malignancies of the lung, prostate, and colon may have medical, psychosocial, and sexual problems (12–14). Psychosocial problems among cancer survivors are common and may include fear of recurrence and death, anxiety and depression, feelings of alienation or isolation, problems with interpersonal relationships, and economic hardships related to the cost of care, job loss, and employment and insurance discrimination (15,16). Concern for the associated threats to function and well-being of cancer survivors has prompted investigators to focus on issues related to quality of life following cancer treatment. Although cancer is increasingly viewed as a chronic illness and there are now greater numbers of survivors, relatively little is known about their health and disability status.
This paper characterizes a population-based sample of adults reporting a history of cancer in terms of their sociodemographic and health characteristics. Three questions are then addressed: first, is a history of cancer a risk factor for poor health and disability? Second, among cancer survivors, what characteristics are associated with poor health and disability? Third, are reports of poor health and disability among cancer survivors associated with greater use of supportive care services?
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Methods
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Data Source
The National Health Interview Survey (NHIS) is conducted by the National Center for Health Statistics, Centers for Disease Control and Prevention, and it is the principal source of information on the health of the civilian, noninstitutionalized, household population of the United States (17). Estimates of cancer prevalence and information on adult (aged 18 and older) cancer survivors are available from the NHIS because the "sample adult" component of the survey asks, "Have you ever been told by a doctor or other health professional that you had cancer or a malignancy of any kind?" If the respondents report a history of cancer, they are asked the site of the cancer (the interviewer asked about 30 possible cancer sites) and the age when they were first diagnosed with that type of cancer (up to three cancer sites/types could be reported). In these analyses, except where specified, superficial skin cancers reported are excluded.
For a sufficient sample for analyses by cancer type to be obtained, 3 years (1998–2000) of survey data are combined. A total of 4878 of the 95,615 sample adults who were questioned reported a history of cancer. NHIS data are collected through personal interviews conducted in the home. Response rates for the sample adult component of the NHIS in 1998, 1999, and 2000 were 74%, 70%, and 72%, respectively (17–19).
In these analyses, cancer survivors include respondents who reported ever having a diagnosis of cancer, regardless of whether or not they had symptoms of cancer at the time of the survey. The current cancer status (i.e., active disease or remission) was not ascertained in the interview. Disability refers to physical or mental limitations in a social context, that is, the gap between a person's capabilities and the demands of his or her environment (20). This study assesses disabilities related to psychological problems, limitations in activities in daily living (ADL), instrumental activities of daily living (IADL), functional limitations, and any health-related limitations in the ability to work. NHIS questions used to determine health and disability status are indicated in the Appendix.
Statistical Analyses
Descriptive statistics and logistic-regression models are presented to indicate whether cancer survivors, compared with individuals without a self-reported history of cancer, have higher reported rates of fair or poor health or disability, if sociodemographic characteristics and the presence of comorbid conditions are controlled for. Descriptive statistics and logistic-regression models are also presented to identify cancer-specific characteristics associated with poor health and disability (i.e., site or type of cancer, age at diagnosis, and years since diagnosis). The data collected in the NHIS are obtained through a complex sample design involving stratification, clustering, and multistage 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 (21). All p values are two sided; if less than.05, they are considered statistically significant.
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Results
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Cancer Prevalence and Characteristics of Cancer Survivors
In the 3-year study period there were 28.8 million adult survivors of cancer (an annual average of 9.6 million), representing 4.8% of the adult population (Table 1). Respondents identified as cancer survivors, as compared with those with no history of cancer, were significantly older (48.8% vs 14.6% aged 65 and older), more likely to be female (63.0% vs 51.5%), and non-Hispanic white (87.1% vs 73.9%). Perhaps because of their older age distribution, cancer survivors were more likely than others to have other chronic medical conditions (42.1% vs 19.7% reporting one or more conditions), have lower educational attainment (22.8% vs 17.2% with less than a high school education), be currently or formerly married (93.5% vs 80.7%), and have health insurance coverage (93.2% vs 84.8%; Table 1).
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Table 1. Number and Distribution of Adults With Self-Reported History of Cancer by Sociodemographic and Health Characteristics
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A large proportion of cancer survivors were women with a history of cancers of the cervix, uterus, or ovary (21.3%) or breast cancer (21.0%; Table 2). The majority of individuals with a history of cancer were diagnosed before the age of 65 (35.7% under the age of 45 years and 35.1% from the age of 45 to 65 years). A near equal share of survivors reported having been diagnosed within 2 years of the interview (16.8%) and 20 or more years before the interview (15.1%; Table 2).
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Table 2. Number and Distribution of Adults With Self-Reported History of Cancer by Cancer-Related Characteristics
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Is a History of Cancer a Risk Factor for Poor Health and Disability?
According to bivariate analyses, cancer survivors were significantly more likely than others to report being in fair or poor health (29.8% vs 10.5%), to have three or more other chronic medical conditions (3.2% vs 0.9%), psychological problems (5.4% vs 2.8%), one or more limitations of ADL or IADL (11.3% vs 3.2%), one or more functional limitations (58.1% vs 28.5%), and among those under the age of 65, to be unable to work because of their health (16.8% vs 5.0%; Table 3). Significantly higher levels of self-reported poor health status and disability were observed in each of the three age groups assessed (18–44, 45–64, and 65 and older). One third (33.9%, standard error 1.3) of the individuals with a history of cancer reporting ADL or IADL or certain functional limitations mentioned cancer as a cause of their limitations.
Multivariate logistic regression models that controlled for differences in selected sociodemographic and health characteristics confirm the greater likelihood of poor health and disability among those reporting a history of cancer. Individuals reporting no chronic illness, either cancer or other chronic illnesses, were compared with two groups of cancer survivors, those with and without other chronic illness. Cancer survivors as compared with those without cancer or other chronic illness were significantly more likely to report being in fair or poor health (OR 2.97 and 10.03, respectively for those with only cancer and those with cancer in addition to other chronic illness), to have disabling psychological problems (OR 2.18 and 5.91, respectively), to have one or more limitations in ADL or IADL (OR 2.22 and 6.20, respectively), to have one or more functional limitations (OR 1.74 and 5.06, respectively), and among those aged 65 and younger, to be unable to work because of their health (OR 3.22 and 11.80, respectively; Table 4).
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Table 4. ORs and 95% CIs for the Model Identifying Characteristics Associated With Health and Disability Status Among Adults
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Among Cancer Survivors, What Characteristics Are Associated With Poor Health and Disability?
According to bivariate analyses, relative to women with a history of breast cancer, individuals with a history of lung and respiratory cancer were more likely to be in fair or poor health, and women with a history of cervical cancer were more likely to report psychological problems (Table 5). According to multivariate analyses, relative to women with a history of breast cancer, individuals with a history of lung or respiratory cancers, and leukemia or lymphoma reported poorer health status. Men with a history of lung or respiratory cancers were more likely to report psychological problems. Men with a history of colorectal cancer and men with a history of melanoma were less likely to report having limitations in ADL or IADL. Men with a history of prostate cancer were less likely to report functional limitations. Men with "other" cancers were more likely to report inability to work because of their health (Table 6).
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Table 5. Health and Disability Status Among Adults With a Self-Reported History of Cancer by Cancer-Related Characteristics
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Table 6. ORs and 95% CIs for the Model Identifying Characteristics Associated With Health and Disability Status Among Adults With a Self-Reported History of Cancer
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Relationships between sociodemographic and health characteristics and disability appeared to be similar among cancer survivors and the entire population. Younger individuals diagnosed before the age of 45, for example, were at highest risk of psychological problems (OR 2.36 relative to those aged 65 and older and diagnosed after the age of 65). Higher educational attainment was generally associated with better health and lower levels of disability, whereas an increased number of comorbid conditions was consistently associated with poorer health and higher levels of disability (Table 6).
In all age groups, cancer survivors reported significantly higher rates of chronic illness (Table 7). The prevalence of cardiovascular disease is especially high (e.g., 10.6% vs 4.4% among those aged 18–44). There is a higher prevalence of current or former smokers among cancer survivors as compared with those without a history of cancer (57.6% vs 45.7%).
Are Reports of Poor Health and Disability Among Cancer Survivors Associated With Greater Use of Supportive Care Services?
Physician specialists were consulted by cancer survivors in the past year at more than double the rate of those without a history of cancer (59.7% vs 23.1%; Table 8). The use of physical therapy, occupational therapy, speech therapy, respiratory therapy, or audiology services was significantly greater among cancer survivors than among those without a history of cancer (12.8% vs 6.7%). Use of these services was even greater among cancer survivors reporting functional limitations (18.2%). More than one third (34.6%) of cancer survivors reporting psychological problems had seen a mental health professional in the past year. Among cancer survivors unable to work because of their health, 19.5% had received Supplemental Security Income (SSI) disability benefits from the Social Security Administration (Table 8).
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Discussion
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Our analyses indicate that a medical history of cancer at least doubles an individual's likelihood of poor health and disability. When a cancer history is coupled with the occurrence of another chronic illness, the likelihood of poor health and disability is approximately 5–10 times higher than would be expected. This excess morbidity may reflect persistence of late effects of cancer and its treatment and the consequences of underlying risk factors for cancer. Smoking behavior, for example, contributes significantly to heart disease, respiratory illness, and other ailments, and the higher prevalence of a history of smoking among cancer survivors could, in part, explain poorer health and disability.
The high prevalence of comorbid chronic illness and disability among cancer survivors is a striking finding with implications for health care. Nearly one half of cancer survivors are aged 65 and older. They may have preexisting chronic diseases and functional limitations at the time of their cancer diagnosis, but the higher prevalence of chronic illness among cancer survivors relative to others may be a consequence of the late effects of cancer and its treatment. It is likely that the emerging chronic disease model of care (22,23) will be applicable to all cancer survivors, because even among younger cancer survivors, rates of cardiovascular disease, functional limitations, and work limitations are quite high. The chronic disease model posits that through more productive interactions between patients and provider teams, functional and clinical outcomes can be improved. The model calls for improvements in coordinated delivery systems, including connecting health systems with community resources to support patients in a meaningful way (www.Improvingchroniccare.org).
Cancer is primarily a disease of the elderly population, and it is expected that the aging of the U.S. population will increase the number of older persons vulnerable to cancer. Barring any major prevention and treatment breakthroughs in the next three decades, as the proportion of persons aged 65 years and older expands, greater numbers of individuals diagnosed with cancer are anticipated (2,3). Accordingly, there will be an increase of older cancer survivors. Primary care physicians, geriatricians, and oncologists caring for individuals with a history of cancer should be made aware of the excess of morbidity associated with cancer and consider the appropriateness of supportive care services for survivors. Referrals to rehabilitative and mental health services could assist in ameliorating symptoms and improve function (24–27). Disability among cancer survivors appears to be most pronounced in the area of physical functioning. With nearly one in six (16.8%) working-age cancer survivors reporting an inability to work and another 7.4% limited in their ability to work, clinicians should consider the appropriateness of occupational therapy, rehabilitative services, and employment-related counseling. Although occurring less frequently, psychological problems for cancer survivors pose a high risk. Consistent with the literature (28–30), our analyses show that a major risk factor associated with psychological problems among cancer survivors is a diagnosis of cancer in adults under age 45. Surprisingly, there appears to be no diminution of risk with time from diagnosis.
This study's strength lies in the use of existing population-based NHIS data and maximizing its potential to provide the foundation for systematic in-depth studies. The results can inform the conduct of prospective studies that are better able to identify the nature of the observed associations. The findings underscore the great need for prospective studies to identify how long-term effects of cancer, its treatment, and other factors contribute to disability. Questions regarding how to ameliorate the morbidity associated with cancer must be answered through carefully designed intervention studies.
The limitations of the study are due to the nature of the data collected. Results pertain only to the adult noninstitutional household population and not to cancer survivors who reside in institutions (e.g., hospices or nursing homes). The NHIS interviews rely on self-reports of cancer, and such reports tend to underestimate cancer prevalence (31,32). In addition, the cross-sectional nature of the NHIS precludes inferring causal associations between a history of cancer and poor health and disability. In addition, although the effects of cancer survivorship on health status and disability were analyzed by controlling for several sociodemographic characteristics and the presence of comorbid chronic illnesses, there are likely unmeasured characteristics of respondents related to both survivorship and disability that could confound the apparent associations. Assessing levels of disability that are associated with cancer among cancer survivors is challenging because of the existence of higher levels of comorbidity at older ages (3,33,34).
In spite of these limitations, the NHIS data provide an extraordinary source of population-based information about cancer survivorship in the United States. Other population-based surveys have identified cancer as an important cause of disability. The 1999 Survey of Income and Program Participation, for example, identified cancer as the 13th leading cause of disability and estimated that for 792,000 U.S. adults, cancer was the main health condition associated with their disability (35).
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Appendix: NHIS Questions Related To Health Status and Disability
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Some of the health status and disability-related questions were asked directly of the sample of adult respondents to the NHIS (i.e., history of cancer, other chronic illnesses, psychological problems, and functional limitations). Other measures were ascertained in the general household portion of the interview, where a household proxy response was used if the sample adult was not available (i.e., general health status, ADL/IADL, or health-related work limitations).
General health status: "Would you say [your/person's] health in general is excellent, very good, good, fair, or poor?"
Chronic medical conditions: Respondents reported physician-diagnosed cardiovascular disease (i.e., report of coronary heart disease, angina, history of heart attack or myocardial infarction, heart condition, or stroke), emphysema, diabetes (currently treated), and the following conditions occurring in the last 12 months: asthma; ulcer; weak or failing kidneys; or liver condition.
Psychological problems: reports of feelings (i.e., feeling, at least some of the time, sad, nervous, restless or fidgety, hopeless, worthless, or that everything was an effort) in the past 30 days that had interfered with their life or activities a lot.
Limitation in ADL: "Because of a physical, mental, or emotional problem, [do you/does person] need the help of other persons with personal care needs, such as eating, bathing, dressing, or getting around inside this home?"
IADL: "Because of a physical, mental, or emotional problem, [do you/does person] need the help of other persons in handling routine needs, such as everyday household chores, doing necessary business, shopping, or getting around for other purposes?"
Functional limitations: Having any degree of difficulty without using any special equipment with walking a quarter of a mile, about three city blocks; walking up 10 steps without resting; standing or being on your feet for about 2 hours; sitting for about 2 hours; stooping, bending or kneeling; reaching up over head; using fingers to grasp or handle small objects; lifting or carrying something as heavy as 10 lb such as a full bag of groceries; pushing or pulling large objects, such as a living room chair; going out to do things such as shopping, movies, or sporting events; participating in social activities, such as visiting friends, attending clubs and meetings, going to parties, relaxing at home or for leisure (reading, watching TV, sewing, listening to music).
Work limitation: "Does a physical, mental, or emotional problem now keep [you/person] from working at a job or business?" or are [you/person] "limited in the kind or amount of work [you/they] can do because of a physical, mental, or emotional problem?"
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Acknowledgments
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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.
Address correspondence to Maria Hewitt, National Cancer Policy Board, Institute of Medicine, 500 5th Street, NAS 308, Washington, DC 20418. E-mail: mhewitt{at}nas.edu
Received August 8, 2002
Accepted August 9, 2002
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Abstract
Methods
