Cancer survivors are a group with unique health needs, and cancer survivorship is an area in need of better scientific understanding. First, cancer survivors experience the distress of a cancer diagnosis, the physical consequences of the disease, the complexity of treatment decisions, and the side effects of treatment. After completing initial treatment, cancer survivors face physical and psychological sequalae as well as the social and financial impact of the cancer, all of which can persist for years after the completion of treatment. Reports such as the Institute of Medicine’s From Cancer Patient to Cancer Survivor: Lost in Transition (2006) and the Centers for Disease Control and Prevention’s The National Action Plan for Cancer Survivorship (2004) highlight the growing clinical, public health, research, and policy efforts to better understand and meet the needs of survivors. The cancer survivor movement has identified family members and informal cancer caregivers as another population with unique needs resulting from the impact of cancer on their lives. Though still relatively young in academic terms, the field of cancer survivorship research has identified health-related quality of life, continuing care, employment and financial issues, and health behaviors as areas in which cancer survivors can experience negative health outcomes.
Racial/ethnic and socioeconomic cancer health disparities are relatively well described in preventive health behaviors, early detection, incidence, and mortality, but little research to date describes disparities among cancer survivors (Aziz & Rowland, 2002). Non-White race/ ethnicity and lower socioeconomic status (SES)—which includes income, education, and employment—are predictive of poorer survival rates, less access to quality health care, and socio-ecological burdens (Ashing-Giwa, 2005). The conceptual models of adjustment to cancer implicit in much of survivorship research to date focus on individual demographic, medical, and attitudinal factors. Of these factors, socioeconomic status (SES)—which includes income, education, and employment status—is an important aspect of health disparities, thought by some to be more predictive of health outcomes than race or ethnicity.
Ashing-Giwa (2005) outlined a model for understanding health disparities among cancer survivors that included environmental, cultural, and health system factors. Environmental factors include variables such as neighborhood characteristics, which may impair accessibility to needed specialists, services, or medications. The model includes social support and spirituality, which can act as buffers to decrease the impact of negative life events. Cultural differences in ethnicity, ethnic identity, or acculturation can lead to different prioritization of outcomes, different medical decisionmaking processes, differences in the use of spirituality and social support, communication difficulties, or avoidance of health care providers. A prominent health system issue related to access to care is insurance coverage, lack of which can lead to late-stage cancer at diagnosis, sub-optimal treatment, and higher mortality rates. Health provider biases, such as lower likelihood of prescribing needed pain medications, must also be considered. The intersection of survivor and caregivers’ unique and increased medical needs with the factors that cause health disparities suggests that unique disparities may exist among survivors and caregivers.
This topic provides an overview of the issues faced by cancer survivors and literature describing racial/ethnic and SES disparities among survivors and caregivers.While health disparities exist for various gender, age, and sexual orientation groups, they are not described in this topic. Each section of this topic starts by providing an overview of the given issue faced by survivors and then describes the extent of research on racial/ ethnic and SES disparities relevant to that issue.
DEFINITIONS AND DEMOGRAPHICS
In this topic, the term "cancer survivor" will apply to people from the time of cancer diagnosis through the balance of their lives (Mullan, 1985), a definition that became widespread with the growth of the field of survivorship in the late 20th and early 21st centuries. The number of cancer survivors in the United States has grown steadily, from 3 million in 1971 to 11.7 million in 2007 (SEER, 2010), as a result of improving survival rates garnered from advances in cancer treatment and screening.
Other contributing factors include increased life expectancy, overall population growth, and increasing numbers of older people. Given the ongoing nature of these trends, the number of cancer survivors is expected to continue to rise (Institute of Medicine, 2006).
In 2007, an estimated 88% of survivors were White (10.3 million), 8% were African American (942,000), and 4% were from other ethnic groups (SEER, 2010). Survivors are less diverse than the general U.S. population which, in 2007, was 66% White, 15% Hispanic, 13% African American, and 4% Asian (U.S. Census Bureau, 2008). The lower levels of diversity among survivors likely reflect increased mortality rates among certain racial/ethnic groups as well as less diversity among older Americans—cancer is more likely to occur in older people and the majority of survivors (60%) are 65 or older. The most common initial diagnoses among survivors are breast (23%), prostate (20%), or colorectal cancer (10%), which varies by racial/ethnic group (Schultz, Stava, Beck, & Vassilopoulou-Sellin, 2004). Most survivors have completed initial curative treatment and are disease-free. Those under treatment for a new diagnosis, recurrence, or metastatic disease make up smaller fractions. In recognition of this, the rest of this topic will focus primarily on disease-free, post-treatment survivors.
HEALTH-RELATED QUALITY OF LIFE AND LATE EFFECTS
Health-related quality of life (HRQOL) is a multidimensional construct that includes physical, emotional, social, and functional well-being and is, perhaps, the best studied aspect of survivorship. While deficits in HRQOL may be considerable during curative treatment and immediately thereafter, the majority of disease-free long-term cancer survivors (e.g., those more than 5 years from diagnosis) report overall HRQOL that is comparable to similarly aged peers with no history of cancer (Ganz et al., 2002; Tomich, Helgeson, & Nowak Vache, 2005). However, a significant proportion of long-term survivors continue to experience diminished functioning, such that survivors in the National Health Interview Survey (NHIS) report deficits in self-rated health (Schootman, Deshpande, Pruitt, Aft, & Jeffe, 2010). In the NHIS, African American survivors’ self-rated health is somewhat poorer, but their level of psychological distress is modestly better than for Whites (Schootman et al., 2010; Short & Mallonee, 2006). Some studies report lower levels of physical well-being among African American cancer survivors and better psychological functioning (Ashing-Giwa & Lim, 2009; Bowen et al., 2007), while others report no racial differences in HRQOL. HRQOL in non-White survivors has been related to concerns about money, housing, and neighborhood characteristics (Ashing-Giwa, Ganz, & Petersen, 1999; Ashing-Giwa, Tejero, Kim, Padilla, & Hellemann, 2007), and African American/White HRQOL disparities may be explained by disease characteristics, comorbidities, and neighborhood characteristics (e.g., segregated neighborhoods) (Hao et al., 2010). Cancer survivors with less education and low incomes are at risk of poor HRQOL (Clauser et al., 2008). Even within racial/ethnic groups, SES can impact HRQOL. African American survivors with lower SES have poorer health than African American survivors with higher SES (Ashing-Giwa, 2005), suggesting that the effects of race/ethnicity and SES play an important role in survivor HRQOL that may be additive.
Symptoms and side effects of cancer and cancer treatment are important determinants of survivors’ HRQOL. Some symptoms (e.g., pain and urinary incontinence) may arise during treatment and persist over time. Other side effects (i.e., late effects) have a later onset, typically surfacing months or even years after the cessation of therapy (Stein, Smith, Sharpe, Zhao, & Kirch, 2008). Late effects manifest as both physical and emotional deficits, including toxicity to the cardiac, pulmonary, and renal systems, neurocognitive impairment, hormonal deficiency, and diminished endocrine and reproductive functioning (Institute of Medicine, 2006). While little research describes disparities in survivor late effects, Schultz et al. (2004) found that Hispanic survivors were more likely to report abdominal pain, diabetes mellitus, frequent infections, and migraine headaches, whereas African American survivors were more likely to cite circulatory problems, dizziness, heart disease, memory loss, and lung problems. For an in-depth review of long-term late effects, see From Cancer Patient to Cancer Survivor: Lost in Transition (Institute of Medicine, 2006). This topic provides an overview of several of the most common, well-researched effects.
Cancer survivors are at risk for recurrence of the original cancer or the development of a new, biologically distinct, second primary cancer. Recurrence is not uncommon among survivors, with rates varying depending upon type of cancer, stage of disease, and treatments received (Duncan et al., 1993; Martini et al., 1995). Higher rates of recurrence among African Americans are generally attributed to more advanced stage at diagnosis and/or receipt of less complete treatment (Moran et al., 2008; Vicini et al., 2010). After adjusting for SES, African American and White colorectal cancer patients with the same stage of disease and treatment have similar survival and recurrence-free survival rates (Dimou, Syrigos, & Saif, 2009), suggesting that these factors play an important role in explaining racial/ethnic recurrence disparities.
An estimated 8% of cancer survivors have second primary cancers (Mariotto, Rowland, Ries, Scoppa, & Feuer, 2007). The high rate of second primary cancers has been attributed to late effects of treatment and the same risk factors that led to the first cancer. African Americans have higher incidence rates for second cancers (SEER, 2006), but lower prevalence rates than Whites (Mariotto et al., 2007). This counterintuitive finding is similar to African Americans’ higher incidence and lower prevalence rates for first primary cancers, which has been attributed to African Americans’ higher cancer mortality rates and lower life expectancy. Because of the threat of cancer returning, survivors never really "get over" cancer (Mullan, 1985) and recurrence is one of the most common concerns of cancer survivors (Baker, Denniston, Smith, & West, 2005).
The best-studied side effect of cancer may be pain, which is highly feared, has barriers to its management, and impacts HRQOL (Caraceni & Portenoy, 1999). Though pain is most common during treatment (59%), it is also prevalent among survivors who have completed treatment (33%) (van den Beuken-van Everdingen et al., 2007). Research on pain disparities suggests that African Americans and other non-Whites typically report higher levels of cancer-related pain, and have fewer resources and more barriers to adequate pain management (Cleeland, Gonin, Baez, Loehrer, & Pandya, 1997; Yoon et al., 2008). Compared to Whites, African Americans are more likely to have their physicians underestimate their pain (Anderson et al., 2000). Likewise, African Americans and Hispanic cancer survivors reported experiencing more barriers to the management of their cancer pain (Stein et al., 2010). Higher levels of current pain among African American than White survivors have been explained by a combination of demographics, education, disease, and neighborhood characteristics (Smith, Crammer, & Stefanek, 2010).
Other common long-term effects include fatigue, which is among the most common and distressing symptoms of cancer patients during active treatment (Richardson & Ream, 1996; Stone, Richards, A’Hern, & Hardy, 2000) and can be quite persistent following the completion of initial treatment (Bower et al., 2006). Cancer survivors may have difficulty adjusting to life after treatment (Mullan, 1985) and experience depression, cognitive impairment, or other psychological sequalae (Bender et al., 2006; Bower, 2008). Cancer can also affect sexual functioning and interest in sex for both genders (Schover, 2005). Further, lower-SES survivors have been shown to have worse physical functioning (Bowen et al., 2007) and an increased number of symptoms such as pain, fatigue, and depression (Eversley et al., 2005; Mao et al., 2007).
While the impact of the disease is mostly negative, some studies have demonstrated benefits from the cancer experience among some survivors. Survivors may gain a greater appreciation for life, improve relationships with family and friends, and have a sense of increased meaning, purpose, or spirituality (Foley et al., 2006; Tomich et al., 2005). One study found Hispanic survivors more likely to report that their family relationships improved (Schultz et al., 2004). There is a growing body of research describing longterm late effects among survivors, with a few studies directly examining disparities. Given that racial/ethnic disparities in cancer recurrence and pain appear to be accounted for by SES, access to care, and neighborhood characteristics, future efforts to investigate HRQOL and late-effect disparities should include these factors whenever possible.
SURVEILLANCE AND CONTINUING CARE
After cancer survivors complete initial treatment and begin to return to their former roles, they continue to need cancer care due to persistent symptoms as well as their risk of recurrence and second cancers (Oeffinger & McCabe, 2006). Follow-up care, at minimum, involves the survivors seeing a physician every 3 to 4 months for 2 or 3 years to check for recurrence, metastasis, and side effects (National Cancer Institute, 2010). Survivors may also talk to their physicians about developing survivorship care plans that cover physical, emotional, social, and spiritual needs. Survivors continue to experience significant informational needs about cancer tests and treatment (70.8%), ways to increase health or reduce cancer risk (67.8%), side effects of cancer (63.3%), cancer-related psychological issues (54.4%), insurance (42.1%), and sex and fertility (30.9%) (Beckjord et al., 2008).
There are guidelines for surveillance—searching for the recurrence of the original cancer—and screening—the search for new cancers. These forms of early detection can improve treatment efficacy, quality of life, and overall prognosis. Surveillance is particularly important for survivors. Mammography utilization has been shown to decrease from 79.8% among 1-year breast cancer survivors to 62.6% at 5 years, suggesting that rates may be lower than expected among long-term survivors (Doubeni et al., 2006). Studies have shown lower breast and colorectal cancer surveillance rates among non-Whites than Whites and, for breast only, among those with lower SES (Ellison, Warren, Knopf, & Brown, 2003; Keating, Landrum, Guadagnoli, Winder, & Ayanian, 2006), which may partly result from lack of access to oncologists and diagnostic equipment. Non-White survivors rely on primary care physicians (PCP) rather than oncologists more than Whites (Mao et al., 2009; Snyder et al., 2008). Those from lower-SES groups are less likely to see physicians, more likely to utilize urgent care (e.g., emergency rooms), and have greater need of assistance with appointments, transportation, and out-of-pocket costs (Dwight-Johnson, Ell, & Lee, 2005; Ng et al., 2008). Other factors such as fear of recurrence may influence disparities in surveillance rates (Ashing-Giwa et al., 2010). There is a need to improve surveillance for survivors generally, and among non-White and low-SES groups in particular.
One model of survivorship care calls for oncologists to follow survivors for 5 years, but does not clearly delineate when and how responsibility for care should be transferred to PCP (Oeffinger & McCabe, 2006). Unfortunately, many patients are "lost in transition" and do not receive the care they should when they move from their oncologist to their PCP (IOM, 2006). This model may be impractical given that the supply of oncologists is insufficient to meet the medical needs of the growing population of cancer survivors (Institute of Medicine, 2006). Results suggest that the majority of survivors—even those only a few years from diagnosis—do not see an oncologist annually (Keating et al., 2007; Snyder et al., 2008). Thus, much of the responsibility for survivor care belongs to PCP. Most PCP are willing to take this responsibility, but many express uncertainties about guidelines for survivor care (Nissen et al., 2007), which may reflect the lack of guidelines for many relatively well-studied areas of survivorship care such as cardiac and pulmonary late effects (Earle, 2007). Further, survivors seen by PCP are less likely to be up to date with surveillance tests than those seen by oncologists (Field et al., 2008; Keating et al., 2006). On the other hand, survivors seen by PCP are more likely to receive noncancer preventive services, such as influenza vaccines, than those seen by oncologists (Snyder et al., 2009). Together, these results suggest that a coordinated effort where oncologists provide for cancer-related needs and PCP for other health concerns may provide the best survivor care (Kantsiper et al., 2009). The coordination of care that such a model would require is complicated by confusion among survivors and health providers as to who should provide which aspect of follow-up care (Edwards et al., 2002; Hewitt, Bamundo, Day, & Harvey, 2007). Furthermore, many PCP report that oncologists do a poor job transferring survivors to their care (Hewitt et al., 2007; Nissen et al., 2007). One potential solution to these problems is the use of cancer treatment summaries and survivorship care plans (Ganz & Hahn, 2008). One study found that survivors seen by PCP provided with surveillance guidelines had rates of recurrence and levels of HRQOL equivalent to those seen by oncologists (Grunfeld et al., 2006).
Another area of concern is patient-provider communication. Non-White women report that physicians do not discuss survivorship care plans or permit patient input (Burg, Lopez, Dailey, Keller, & Prendergast, 2009; Royak-Schaler et al., 2008). Cancer survivors from lower-SES groups experience less frequent communication with providers, as well as delays in diagnostic and therapeutic care, resulting in lower-quality care (Ashing-Giwa et al., 2010; Ok, Marks, & Allegrante, 2008). Improving patient-provider communication among underserved groups, perhaps through increasing provider cultural competency, is an important strategy to improving survivor care. The continuing care of survivors is an emerging field that has yet to define and implement optimal care models and is in need of further research; even so, early evidence suggests that there are health disparities in cancer survivor follow-up care.
HEALTH BEHAVIOR
Health behaviors—exercise, diet, smoking—may be especially important for survivors due to their increased risk for cancer and other conditions (e.g., fatigue, cardiovascular disease, and depression). These behaviors are related to cancer outcomes among survivors: post-treatment physical activity may improve recurrence-free and overall survival (Meyerhardt et al., 2006); decreasing consumption of Western foods may lower risk of recurrence and overall mortality (Meyerhardt et al., 2007); and continued smoking after treatment may increase risk of smoking-related second cancers (Do et al., 2004). Health behaviors may also improve survivor functioning and quality of life (Blanchard et al., 2004). Clinical trials demonstrate that exercise can i mprove cardiopulmonary function, and quality of life (Courneya et al., 2003), and cancer-related fatigue among survivors, though accrual, retention, and affect maintenance are issues (Mustian et al., 2007). The growing evidence that primary preventive health behaviors are beneficial to survivors has led the American Cancer Society to develop a guide for physical activity and nutrition during and after cancer treatment (Doyle et al., 2006). The importance of health behaviors among survivors is complemented by suggestion that the time after the completion of treatment may be a "teachable moment" when survivors are especially receptive to interventions intended to improve health behavior (Ganz, 2005).
The cancer experience may influence health behavior through increasing perceptions of vulnerability and enhancing the priority placed on health among survivors and family members. Consistent with survivors’ higher risk of cancer, they perceive higher levels of absolute and relative risk than those that are cancer free (Mayer et al., 2007). On the other hand, survivors may be more fatalistic than those with no cancer history (Lykins et al., 2008). Most survivors and family members report that cancer led them to make positive changes (Bellizzi, Miller, Arora, & Rowland, 2007; Humpel, Magee, & Jones, 2007), though some report no or negative changes. Negative changes in behavior may be due to losses in functional ability experienced by some survivors (Hawkins et al., 2010). Research suggests that cancer survivors have higher cancer screening rates and are more likely to meet physical activity recommendations than controls, but may have similar or higher rates of smoking (Bellizzi, Rowland, Jeffery, & McNeel, 2005). Although results are not consistent across health behaviors or studies, the evidence suggests that the cancer experience improves health behavior more often than not.
Although a robust literature describes health behavior disparities among cancer-free low-SES and non-White groups, studies of health behavior disparities among survivors are scant. NHIS results showed that African American survivors and no-cancer controls were less likely to be physically active than White survivors and controls, and that African American survivors were more likely to be overweight or obese than African American controls or Whites (Schootman et al., 2010). Survivors in lower-SES groups may be less physically active and more likely to smoke (Ng et al., 2008). Changes in diet and physical activity after a diagnosis appear to vary for different racial/ethnic and SES groups (Satia, Walsh, & Pruthi, 2009; Stolley, Sharp, Wells, Simon, & Schiffer, 2006). Possible elements of interventions are suggested by African American survivor barriers to improving health behavior (e.g., pain, lack of an exercise partner or pleasing walking areas) (Stolley et al., 2006) and associations between positive health behavior change and spiritual well-being (Hawkins et al., 2010).
