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© 2002 American Society for Clinical Oncology Mental Health Service Use Among Adult Cancer Survivors: Analyses of the National Health Interview SurveyByFrom the National Cancer Policy Board, Institute of Medicine, Washington, DC, and Office of Cancer Survivorship, National Cancer Institute, National Institutes of Health, Bethesda, MD. Address reprint requests to Maria Hewitt, DrPH, National Cancer Policy Board, Institute of Medicine, 500 5th St, NAS 308, Washington, DC 20001; mhewitt{at}nas.edu
PURPOSE: Analyses were conducted to obtain national estimates of mental health service use, unmet need for such services, and the prevalence of mental health problems among individuals reporting a cancer history. METHODS: Of a nationally representative sample of 95,615 adults in the United States interviewed as part of the 1998, 1999, and 2000 National Health Interview Survey, 4,878 reported a history of cancer (excluding superficial skin cancer). Analyses assessed whether cancer survivors relative to those without a self-reported history of cancer had increased use of mental health services and had increased reports of unmet need for such services. Analyses were also conducted to ascertain demographic and health characteristics associated with service use and unmet need. RESULTS: Compared with individuals without a cancer history, cancer survivors reported significantly greater contact in the past year with a mental health provider (7.2% v 5.7%). Cancer survivors were more likely to have used mental health services (odds ratio, 1.60 among those without other chronic illnesses and 3.04 among those with other chronic illnesses), and mental health service use was significantly greater among those who were under age 65 and diagnosed at younger ages, were formerly married, or had other comorbid chronic conditions. If all cancer survivors with mental health problems or who needed but could not access mental health services due to cost had received such care, mental health service use would have increased from 7.2% to 11.7%, a 62% increase in use. CONCLUSION: Cancer seems to be one of several chronic illnesses that precipitates the need for and use of mental health services. Improvements are needed in recognizing mental health problems among cancer survivors and reducing barriers to psychosocial service use.
THE PROVISION OF psychosocial support services for individuals with cancer is recognized as an essential component of quality care.1,2 Some level of psychosocial distress is normal after a diagnosis of cancer, given the nature of the disease. Cancer may be life-threatening, treatment can be physically disabling, and cancer survivors live with the possibility of recurrence. Cancer-related depression and anxiety can be expected to dissipate with time for the majority of individuals diagnosed with cancer. For others, however, psychosocial distress may interfere substantially with comfort, quality of life, and the ability to make appropriate treatment decisions and adhere to treatment.3,4 Evaluations of psychosocial interventions aimed at cancer patients have shown mental health benefits, especially among individuals who are most distressed.5-7 Psychosocial interventions generally address both mental health needs and social concerns such as those related to employment, insurance, and supportive care access. An estimated third to half of individuals diagnosed with cancer experience significant levels of distress.8-10 Most of the studies in the United States on which these estimates are based have been conducted within research-oriented cancer centers and have focused on psychosocial distress or psychiatric illness within the first few years of treatment. A number of medical, personal, and sociocultural factors have been shown to affect psychosocial adaptation to cancer, including extent of symptoms, relationship with the medical team, history of psychiatric problems, coping skills, social support, and socioeconomic status.3,4,9 Very little, however, is known from prospective studies of the extent to which psychosocial distress among individuals with cancer leads to use of mental health services. Few population-based estimates are available of mental health services use among cancer survivors. In each of the 3 years, 1998 to 2000, a nationally representative sample of individuals was interviewed as part of the National Health Interview Survey (NHIS).11-13 Respondents were asked about any prior diagnoses of cancer, the year they were diagnosed, and whether they had used mental health services in the past year or had unmet need for such services because of cost. Questions were also asked about mental health symptoms in the past 30 days and the extent to which such symptoms interfered with their lives. The survey therefore provides an opportunity to assess the use of (and unmet need for) mental health services among individuals who report a history of cancer and the demographic, health, and mental health characteristics associated with service use.
Data Source The NHIS is conducted by the National Center for Health Statistics, Centers for Disease Control and Prevention, and is the principal source of information on the health of the civilian, noninstitutionalized, household population of the United States. As part of the 1998, 1999, and 2000 NHIS, 95,615 adults (age 18 or older) were sampled from participating households and interviewed in person in their homes.11-13 Estimates of cancer prevalence and information on cancer survivors are available from the NHIS because these sampled adults were asked if they had "ever been told by a doctor or other health professional that you had cancer or a malignancy of any kind." If respondents reported a history of cancer, they were 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). Of the 95,615 individuals questioned, 4,878 reported a history of cancer (excluding superficial skin cancer). When more than one cancer had been diagnosed (573 respondents reported > 1 cancer, including superficial skin cancer), the site or type of cancer was categorized as the first diagnosed (excluding superficial skin cancer). Years since diagnosis was calculated from the reported age at interview and age at first diagnosis. Respondents, in a few cases, seemed to have provided years since diagnosis instead of age at diagnosis, for example, 29 respondents reporting lung cancer said that they were age 10 or younger at diagnosis. When age of diagnosis was under age 11 for selected cancers (eg, breast, cervix, prostate, colon, rectum, uterus, melanoma, and lung), age at first diagnosis was recalculated as age at interview minus age of diagnosis. For purposes of these analyses, cancer survivors include respondents who reported ever having a diagnosis of cancer, regardless of whether they currently had symptoms of cancer. The current cancer status (ie, active disease or remission) was not ascertained in the interview. Respondents were also asked about their history of other chronic medical illnesses, including coronary heart disease, and other cardiovascular problems (eg, stroke), emphysema, asthma, ulcer, diabetes, liver conditions, and kidney problems. A portion of the interview pertained to health service use, and respondents were asked, "During the past 12 months, that is since (12-month reference date), have you seen or talked to any of the following health care providers about your own health: a mental health professional such as a psychiatrist, psychologist, psychiatric nurse, or clinical social worker?" Those answering "yes" were categorized as having had a mental health visit. The reason for the mental health visit was not ascertained and there is no way of knowing whether the visit was related to concerns about cancer. Later in the interview, in a section devoted to health care access, respondents were asked, "During the past 12 months, was there any time when you needed any of the following but didn’t get it because you couldn’t afford it: mental health care or counseling?" Those answering "yes" were categorized as having an unmet need for mental health services. In terms of mental health, respondents were asked a series of questions about their feelings—how often in the past 30 days they had felt sad, nervous, restless/fidgety, hopeless, worthless, or that everything was an effort. Respondents could report that the feelings were felt "all," "most," "some," "a little," or "none" of the time in the past 30 days. If one or more of these feelings were reported at least some of the time, they were asked, "Altogether, how much did these feelings interfere with your life or activities: a lot, some, a little, or not at all?" For these analyses, individuals were categorized as having mental health problems if they reported that their feelings interfered with their lives a lot. The response rate for the sample adult component of the NHIS in 1998, 1999, and 2000 was 73.9%, 69.6%, and 72.1%, respectively.11-13
Statistical Analyses
Cancer Prevalence and Characteristics of Cancer Survivors According to the NHIS, there were 28.8 million adult survivors of cancer (excluding superficial skin cancer) in the 3-year period from 1998 to 2000 (an annual average of 9.6 million), representing 4.8% of the adult population (Table 1). These prevalence estimates, based on self-reports of cancer, are consistent with 1999 prevalence estimates made by the National Cancer Institute using cancer registry data (8.9 million, excluding in situ cancers of the breast and cervix).15 The higher estimates from the NHIS could be due, in part, to reporting of in situ cancers.
Cancer survivors, as compared with those without a history of cancer, were significantly older (48.8% v 14.6% age 65 and older), were more likely to be female (63.0% v 51.5%) and non-Hispanic white (87.1% v 73.9%), and, perhaps because of their older age distribution, were more likely to have lower educational attainment (22.8% v 17.2% with less than a high school education) and to have been currently or formerly married (93.5% v 80.6%) (Table 1). Also perhaps as a function of their older age distribution, cancer survivors were more likely than others to report having other chronic medical conditions (42.1% v 19.7% reporting one or more conditions). Cancer survivors as compared with others were significantly more likely to have health insurance coverage (93.2% v 84.7%) (Table 1). This too is likely a result of their older age distribution and greater health insurance coverage through the Medicare program. Cancer survivors, while older than those without a cancer history, were considerably younger than individuals newly diagnosed with cancer. According to cancer registry data, 58% of people newly diagnosed with cancer during 1995 to 1999 were age 65 and older,15 whereas only 49% of the NHIS population of survivors was age 65 and older at the time of the interview. This is explained in part by the preponderance among survivors of individuals with cancers who tend to be diagnosed at younger ages and who tend to have cancers that are associated with longer survival, for example, breast and cervical cancer. A relatively large proportion of cancer survivors were women who reported a history of cancers of the cervix, uterus, or ovary (21.3%) or breast cancer (21.0%) (Table 2). The majority of cancer survivors had been diagnosed before age 65 (35.7% under age 45 and 35.1% from age 45 to 64). 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).
Use of Mental Health Services Among Those With and Without a History of Cancer According to bivariate analyses, cancer survivors were significantly more likely than others to have used mental health services in the past year (7.2% v 5.7%) (Table 3). Among both cancer survivors and those without such a history, use of mental health services was significantly greater among younger individuals, females, those who had never been married (as compared with married individuals), individuals who had two or more chronic medical conditions, and those with mental health problems (Table 3). Within certain of these higher-use categories, cancer survivors had much greater use of mental health services than others. Among individuals age 18 to 44, for example, 14.0% of cancer survivors as compared with 6.5% of those without such a history reported having used a mental health service in the past year (Table 3).
Mental health service use was significantly greater among cancer survivors relative to those without such a history, according to a multivariate logistic regression model that controlled for differences in selected sociodemographic and health characteristics. 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 a mental health visit (OR 1.60 and 3.04, respectively, for those with only cancer and those with cancer in addition to other chronic illness) (Table 4).
This model confirms the findings from bivariate analyses that mental health service use was greater among younger adults (OR 4.63 for those age 18 to 44 and OR 3.65 for those age 45 to 64, relative to those age 65 to 74) and those who were not married (OR 1.70 for those never married and OR 2.33 for those formerly married, relative to married individuals). Mental health service use was also significantly greater among those with less than a high school education (OR 1.24) and among those with more than a high school education (OR 1.37) as compared with those whose highest level of educational attainment was high school (Table 4). The model suggests lower mental health service use among males relative to females (OR 0.68). Hispanics (OR 0.54), blacks (OR 0.58), and those of other race (OR 0.59) had lower use of mental health services relative to white, non-Hispanics. The model confirms lower use of mental health services among the uninsured relative to those with health insurance coverage (OR 0.75).
Unmet Need for Mental Health Services Among Those With and Without a History of Cancer These findings are confirmed in multivariate logistic regression analyses. Unmet need for mental health services was significantly greater among those with a history of cancer relative to those without cancer or other chronic illness (OR 2.22 and OR 4.62, respectively, for those with only cancer and those with cancer in addition to other chronic illness), among younger individuals (OR 6.80 for those age 18 to 44 and OR 4.64 for those age 45 to 64, relative to those age 65 to 74), and among those without as compared with those with health insurance (OR 4.94) (Table 4). This model also suggests higher levels of unmet need among those with lower educational attainment (OR 1.28 for those with less than a high school education as compared with a high school education), those who had never been married (OR 1.30), and those who were formerly married (OR 2.23) as compared with married persons. Lower levels of unmet need were observed among males as compared with females (OR 0.56) and among Hispanics (0.51), blacks (OR 0.81), and those of other race (OR 0.59) relative to white non-Hispanics (Table 4).
Use of Mental Health Services Among Cancer Survivors Younger age at diagnosis is a cancer-specific characteristic associated with greater use of mental health services (12.5% among those diagnosed under age 45) (Table 5). By cancer site, men with a history of prostate cancer had significantly lower use of mental health services (3.3%) and women with a history of cervical cancer had significantly greater use of mental health services (12.0%), relative to women with a history of breast cancer (6.3%) (Table 5). There seems to be no significant diminution of use of mental health services by years since diagnosis (Table 5).
A number of different characteristics were entered into logistic regression models to predict use of mental health services among cancer survivors. The final model selected for both parsimony and good fit suggests that among cancer survivors, use of mental health services was significantly greater among younger adults and those diagnosed at younger ages (OR 6.63 among those age 18 to 44 relative to those age 65 and older diagnosed at age 65 and older), those who were formerly married (OR 1.86 relative to those who were married), and those with other chronic medical conditions (eg, OR 5.16 among those with three or more conditions relative to those with none) (Table 6). No significant differences in use of mental health services were observed by site when cancer site by sex was entered into the model. Among cancer survivors, the use of mental health services was not significantly lower among males relative to females (Table 6).
Unmet Need for Mental Health Services Among Cancer Survivors Among cancer survivors, a significantly higher proportion of younger adults (6.7% among those age 18 to 44 v 2.6% among those age 45 to 64) and those without health insurance (15.1% among those without v 1.4% among those with health insurance) reported needing mental health services but not receiving them because of cost (Table 3). By cancer site, women with a history of cervical cancer reported significantly greater unmet need relative to women with breast cancer (5.8% v 1.3%) (Table 5). According to multivariate logistic regression analyses, unmet need for mental health services was significantly greater among younger individuals (OR 26.37 among those age 18 to 44 relative to those age 65 and older and diagnosed at age 65 and older) and among those without health insurance (OR 6.02) (Table 6). This model also suggests higher levels of unmet need among those who had been formerly married (OR 2.70 relative to those who were married) and those with other chronic medical conditions (eg, OR 3.42 among those with two other chronic medical conditions relative to those with none) (Table 6). Nearly one (16.1%) in six cancer survivors who had mental health problems said that they had needed mental health services but did not receive them because of cost (Table 3).
Cancer survivors as compared with individuals without a history of cancer report significantly greater use (and unmet need) for mental health services. Cancer seems to be one among several chronic illnesses that precipitates the need for and use of mental health services. These findings from a cross-sectional national survey need to be confirmed using more robust prospective study designs, but they should alert clinicians caring for cancer survivors to the need to address mental health issues. Some evidence indicates that oncologists fail to recognize depression and other psychiatric disorders among their patients.16,17 Cancer-specific screening and assessment tools have been developed to improve the identification of individuals most in need of psychosocial interventions, but such instruments have not been widely used.18 Oncology clinical practice guidelines have incorporated psychosocial support into treatment algorithms, which may prompt health care providers to consider these interventions as part of their care.2,19 Educational programs for primary care and other clinicians have been shown to improve recognition and management of depression.20,21 Health care providers’ recognition of psychosocial distress in their patients needs to be coupled with counseling and referral to appropriate services, but evidence suggests that this is not occurring. In a recent study, only 42% of women who had used professionally provided support services had learned about them from their oncologist.22 Referral for care seems to be a key determinant of service use. According to one study published in 1980, two thirds of newly diagnosed cancer patients screened as being at risk for future psychosocial distress accepted counseling when it was offered.23 There is increased recognition of the need to identify and treat mental health problems in general medical care. In 2002, the United States Preventive Services Task Force recommended, for example, screening adults for depression in clinical practices that have systems in place to assure accurate diagnosis, effective treatment, and follow-up (http://www.ahrq.gov/clinic/3rduspstf/depression/depressrr.htm). Given the findings of the present study, clinicians should be aware that younger individuals and those originally diagnosed at younger ages are more likely to use mental health services and to have more unmet needs for mental health services. Others who seem to be at higher risk are those with other chronic medical conditions and individuals who are not married. Individuals without health insurance seem to have more unmet needs related to costs of care, and referral to community groups that do not charge for services might be appropriate. Younger age as a risk factor for psychosocial distress among cancer survivors has been a consistent finding in the literature.8,9,24,25 Some have suggested that older patients with cancer may have different expectations and fewer competing demands on their time and resources than younger persons.25 Lower rates of mental health service among the elderly could also be explained if they were more reluctant to seek or use services because of social stigma. Although this study found higher rates of mental health service use among women than men in the general population, among cancer survivors, the increase in use by women was not statistically significant. A comprehensive review of studies of sex differences in depression among cancer patients also concluded that there was no sex difference.10 In one large study of psychosocial distress among cancer patients, no differences by sex were found.9 Consistent with findings from the NHIS, this study did find marital status to be a predictor of psychosocial distress, with married women having the lowest levels of distress.9 At least some level of psychosocial support for individuals with cancer is generally available at hospitals involved in the treatment of cancer. When assessed in 1993, virtually all (90%) of the National Cancer Institute–designated cancer centers had on-site support groups available to patients and three quarters (76%) of facilities referred patients to outside programs for additional support.26 A recent study of support services provided within the 37 National Cancer Institute–designated cancer centers for posttreatment cancer survivors found that in 2000 half (49%) of the centers had professionally led support groups for posttreatment cancer survivors.27 The American College of Surgeons’ Commission on Cancer includes provision of psychosocial support as a standard of quality care for its approved cancer programs.28 In addition to hospital-based programs, a wide variety of community-based psychosocial support services are available from the American Cancer Society and other nonprofit organizations (www.acscsn.org; www.wellness-community.org; www.cancercare.org; www.y-me.org). Despite the number of programs, residents of rural and low-income areas may have poor access to psychosocial support services. Even when services are geographically accessible, the stigma attached to mental health services may keep individuals from getting needed assistance. Levels of mental health service use in the past year reported in the NHIS (7.2% and 5.7% among individuals with and without a history of cancer, respectively) are comparable to estimates ascertained from special studies of mental/addictive disorder service use. The National Comorbidity Survey, a nationally representative household survey conducted from 1990 to 1992, estimated that each year approximately 6% of individuals age 15 to 54 saw specialty mental health providers such as psychiatrists, psychologists, psychiatric nurses, and psychiatric social workers. According to this survey, an additional 4% of the adult population received mental health care or care for addictive disorders from human services agencies and voluntary support groups.29,30 The NHIS estimates of unmet mental health service needs are also roughly comparable to levels ascertained from a 1997 to 1998 Robert Wood Johnson–supported national household telephone survey. Here, 11% of the population perceived a need for mental or addictive services, with approximately 25% of these individuals reporting not getting care or experiencing difficulties in obtaining needed care. Worry about costs was listed most frequently as the reason for not receiving care.31 According to the NHIS, 2.3% and 1.6% of individuals with and without a history of cancer, respectively, needed mental health services but did not receive them because of cost. There are few other population-based estimates of mental health service use among cancer survivors. Findings from the 1998 to 2000 NHIS are comparable to those from the 1992 NHIS, which included a special supplement on cancer survivorship. In 1992, 14.2% (95% confidence interval, 11.5% to 17.5%) of individuals with a self-reported history of cancer said that they had received counseling services or had participated in a support group after their diagnosis.32 The 1992 estimate of supportive service use would be expected to be higher because it is an estimate of any prior use after a cancer diagnosis as compared with the 1998 to 2000 NHIS estimate of use in the past year. The 1992 estimate also included support group use, which was not included in the 1998 to 2000 NHIS estimates. The characteristics of individuals most likely to report use of mental health services differed in 1992 from those observed in the 1998 to 2000 NHIS. In 1992, women with breast cancer were more than twice as likely than individuals with other cancers to have received such services. No such increase in use of mental health services among women with breast cancer was observed in the 1998 to 2000 NHIS survey. Psychosocial support services for women with breast cancer were among the first to be developed, and by 2000 such services may have become more widely available to individuals with other types of cancer. The general public’s increased awareness and acceptance of mental health interventions throughout the 1990s has likely also contributed to the acceptance of mental health services among individuals with cancer.33,34 Marked increases in the proportion of the population who received outpatient treatment for depression from 1987 to 1997 have been explained, in part, by the increased availability of effective pharmacologic treatments, media coverage of depression and its treatment, and public health campaigns to educate the public and the medical community about the recognition and treatment of depression.33 The 1992 NHIS indicated that those recently diagnosed with cancer were more than twice as likely than those diagnosed 5 or more years ago to have reported receipt of such services. In the 1998 to 2000 NHIS, there seems to be no significant diminution in use of mental health services by years since diagnosis. This may be explained if social stigma has been reduced over the period, leading to continued use of mental health services or increased use later into the survivorship period. Alternatively, the different time references used in 1992 (any use of services after diagnosis) and from 1998 to 2000 (use of services in the past year) could account for these differences. An estimated 5.4% (SE 0.4%) of cancer survivors (approximately 524,000 individuals per year) reported mental health problems in the past 30 days that had interfered with their lives. A minority of these individuals (34.6%, SE 3.3%) had used mental health services in the past year. If all cancer survivors with mental health problems and individuals who indicated that they needed mental health services but could not obtain them because of cost had received mental health services, mental health service use among cancer survivors would have increased from 7.2% to 11.7%, a 62% increase in use. With this expansion in use, the estimated number of cancer survivors using mental health services each year would have increased from 690,000 to 1,123,000. The share of cancer survivors who could have potentially benefited from mental health services is likely much larger because the 1992 NHIS and other research suggests that cost is not the most significant barrier to mental health service use. Among individuals not using mental health services after their diagnosis of cancer, the 1992 NHIS asked why counseling was not obtained. Most cancer survivors (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.32 In a recent study, the most frequently mentioned reasons cancer patients cited for not using a health maintenance organization cancer counseling center were that they had sufficient support from other sources, they lacked awareness of the program, and that providers had not recommended the program.35 Being married appears to reduce mental health service use among cancer survivors suggesting that social support may buffer the adverse emotional impact of cancer and lead to a decrease in the demand for professional mental health services. There are several limitations associated with these survey-based analyses of cancer survivorship. First, results pertain only to the adult 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. Among individuals reporting a history of cancer, there is no information collected on cancer stage, current status in the illness trajectory (eg, in active treatment or palliative care, or disease-free), or presence of cancer-related symptoms. The inclusion in the NHIS of individuals well enough to complete an interview may underestimate the true rate of mental health service use among cancer survivors because evidence suggests that psychiatric disorders are more common among those with advanced disease.36 The co-occurrence of certain other chronic conditions were controlled for in these analyses, but individuals with a history of cancer may have had other conditions not reported on the NHIS that contributed to their health status and service use. A second limitation of these analyses relates to the cross-sectional nature of the NHIS and a lack of information on reasons individuals sought mental health services. Associations between reports of a history of cancer cannot be causally related to the reported mental health service use. The associations noted can, however, inform the conduct of prospective studies that are better able to identify the nature of the observed associations. A third limitation associated with survey-based estimates is the reliance on self-reports of cancer. 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.37,38 In one study of the validity of self-reported cancer, 39% of individuals with diagnoses documented by a cancer registry failed to report their cancer.39 Underreporting could occur if respondents considered themselves cured of the disease or if there was reluctance to report cancer because of embarrassment or stigma. Others may not have reported cancer to shorten the NHIS interview and to avoid further questions. On the other hand, a history of certain cancers may have been overreported if some individuals confused prior positive cancer screening tests with a diagnosis of cancer. Lastly, estimates of use of mental health services may be unreliable because of the difficulty of accurately recalling and dating the occurrence of mental health contacts. Events could also be underreported as a result of social stigma or overreported if respondents with visits longer than a year ago incorrectly reported them as occurring within the last year. This phenomenon of respondents pulling events forward in time and reporting them even though they occurred before the beginning of the reference period has been well documented.38 Recognizing these limitations, the NHIS does have certain strengths. The NHIS is one of few sources of information about cancer survivorship from a nationally representative sample of households in the United States. Although there is likely some degree of misreporting of cancer and the use of mental health services, there are few other data sources that capture such health service use. Longitudinal studies are needed to improve estimates of mental health service use among cancer survivors. Such studies can better ascertain how cancer precipitates the need for psychosocial services and how health care providers can best interact with individuals to facilitate needed care. More health services research is needed to clarify the benefits and risks of routine screening for psychosocial distress among cancer survivors, and to identify effective interventions and means of delivery to alleviate psychosocial distress.
The analysis, opinions, and assertions contained herein are those of the authors 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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ABSTRACT
INTRODUCTION
