Consequences of Unmet Psychosocial Needs
Psychosocial problems can be created or exacerbated by cancer and its treatment, as well as predate the illness. The failure to address these problems results in needless patient and family suffering, obstructs quality health care, and can potentially affect the course of the disease. Social isolation and other social factors, stress, and untreated mental health problems contribute to emotional distress and the inability to fulfill valued social roles, and interfere with patients’ ability to adhere to their treatment regimens and act in ways that promote their overall health. Additionally, these problems can bring about changes in the functioning of the body’s endocrine, immune, and other organ systems, which in turn could have implications for the course of cancer and other conditions. Families and the larger community also can be affected when psychosocial problems are not addressed.
Although it is clear that psychosocial problems influence health, evidence is still emerging on just how they do so. Moreover, some such problems (such as poverty) obviously cannot be resolved by the health care system. Nevertheless, evidence clearly supports the need for attention to psychosocial problems as an integral part of good-quality health care. Psychosocial health services can enable patients with cancer, their families, and health care providers to optimize biomedical health care, manage the psychological/behavioral and social aspects of the disease, and thereby promote better health.
A significant body of research shows that the psychological and social stressors reviewed in Chapter 1—such as depression and other mental
health problems, limited financial and other material resources, and inadequate social support—are associated with increased morbidity and mortality and decreased functional status. These effects have been documented both for health generally (House et al., 1988; Kiecolt-Glaser et al., 2002) and for a variety of individual health conditions and illnesses, including heart disease (Hemingway and Marmot, 1999), HIV/AIDS (Leserman et al., 2002), pregnancy (Wills and Fegan, 2001; ACOG Committee on Health Care for Underserved Women, 2006), and cancer (Kroenke et al., 2006; Antoni and Lutgendorf, 2007).
Psychosocial stressors are theorized to affect health adversely in a number of ways. First, emotional distress and mental illness can themselves be the source of suffering, diminished health, and poorer functioning through their symptoms and their adverse effects on role performance. Second, psychosocial problems can adversely affect patients’ abilities to cope with and manage their illness by limiting their ability to access and receive appropriate health care resources; adhere to prescribed treatment regimens; and engage in behaviors necessary to manage illness and promote health, such as maintaining a healthy diet, exercising, and monitoring symptoms and adverse responses to treatment (Yarcheski et al., 2004; Kroenke et al., 2006). In multiple focus groups and interviews, patients with chronic illnesses such as diabetes, arthritis, heart disease, chronic obstructive lung disease, depression, and asthma have identified lack of family support, financial problems, lack of health insurance, problems with mobility, depression and other negative emotions, and stress as obstacles to dealing with their illness and health (Wdowik et al., 1997; Riegel and Carlson, 2002; Bayliss et al., 2003; Jerant et al., 2005). Moreover, a growing body of evidence is illuminating how the stress resulting from psychosocial problems can induce adverse effects within the body’s cardiovascular, immune, and endocrine systems (Segerstrom and Miller, 2004; Yarcheski et al., 2004; Uchino, 2006; Miller et al., 2007). Although evidence of adverse health outcomes from these effects is strongest for cardiovascular disease, emerging evidence from animal models and some human data suggest pathways through which these effects can influence the course of other illnesses (Antoni and Lutgendorf, 2007).
A wide range of psychosocial variables may affect the course of illness. For example, several studies have found that individual psychological traits such as optimism, mastery, and self-esteem (sometimes termed psychosocial resources) protect against stress (Segerstrom and Miller, 2004). This chapter details the health effects of three psychosocial factors—social support, financial and other material resources, and emotional and mental status—for which there is strong evidence on health effects, for which there are screening and assessment tools that can be used to detect problems, and for which psychosocial health services (described in Chapter 3) exist to address identified problems. Also presented is evidence of how problems in these areas
affect the way the body works and the course of certain diseases. Together, these effects reduce an individual’s ability to engage in valued roles, and also have negative impacts on both families and the community.
PSYCHOSOCIAL STRESSORS AND THEIR EFFECTS ON PATIENTS
Inadequate Social Support
Humans are social animals, and inadequate social contact and support can have profound adverse consequences. It is not surprising, then, that social support plays a central role in helping cancer patients and their families manage the illness. Although there is currently no single definition of “social support” (King et al., 2006; Uchino, 2006), research reveals that it has multiple dimensions. The web of relationships that exist between a person and his or her family, friends, and other community ties and the structural and functional characteristics of that web are generally referred to as the person’s “social network” (Berkman et al., 2000). The number, breadth, and depth of these relationships together make up one’s degree of “social integration.” Beneficial1 social networks provide different types of support to individuals under stress, including emotional, informational, and instrumental support. Emotional support involves “the verbal and nonverbal communication of caring and concern,” including “listening, ‘being there,’ empathizing, reassuring, and comforting” (Helgeson and Cohen, 1996:135); informational support increases knowledge and provides guidance or advice; and instrumental support involves the provision of material or logistical assistance, such as transportation, money, or assistance with personal care or household chores (Cohen, 2004). Each type of support can improve health care outcomes. For example, emotional support may help people cope more effectively with the obstacles they encounter and with their own emotional response to the challenges of illness. Insofar as knowledge may be gained from others about treatment or other aspects of care, informational support can increase the effectiveness of health care utilization. And instrumental support may help individuals act on this knowledge.
Morbidity and Mortality Effects
Epidemiological studies across a variety of illnesses have found that when individuals have low levels of social support, they experience worse outcomes, including higher mortality rates (IOM, 2001). There is strong
evidence that the perception of the availability of social support protects individuals under stress from psychological distress, anxiety, and depression (Wills and Fegan, 2001; Cohen, 2004), in part by buffering them from the effects of stress (House et al., 1988; IOM, 2001). Consistent with this evidence, greater social integration has been associated with reduced mortality in multiple prospective community-based studies (Wills and Fegan, 2001). Conversely, well-designed studies have shown social isolation to be a potent risk factor for mortality across all causes of death (including cancer), as well as death due to specific conditions such as heart disease and stroke (Berkman and Glass, 2000). Indeed, the relative risk of death associated with social isolation is comparable to that associated with high cholesterol, mild hypertension, and smoking (House et al., 1988; IOM, 2001). The mechanisms by which these effects occur are not fully known, but there is evidence that social relationships that are stressful, weak, or absent can lead to decreased ability to cope with illness, negative emotions such as depression or anxiety, and immune and endocrine system dysfunction (see the discussion below) (Uchino et al., 1996; Kielcolt-Glaser et al., 2002).
Effects of social support on health outcomes have been found specifically among individuals with cancer (Patenaude and Kupst, 2005; Weihs et al., 2005). A recent study following 2,800 women with breast cancer for a median of 6 years, for example, found that women who were socially isolated before their diagnosis had a 66 percent higher risk of dying from all causes during the observation period compared with women who were socially integrated. They were also twice as likely to die from breast cancer during this period2 (Kroenke et al., 2006).
Weakened Coping Abilities and Increased Mental Illness
Psychological adjustment to an illness involves “adaptation to disease without continued elevations of psychological distress (e.g., anxiety, depression) and loss of role function (i.e., social, sexual, vocational)” (Helgeson and Cohen, 1996:136). Positive emotional support is linked to good psychological adjustment to chronic illnesses generally and cancer specifically, and to fewer symptoms of depression and anxiety (Helgeson and Cohen, 1996; Wills and Fegan, 2001; Maly et al., 2005). Conversely, unsupportive social interactions are associated with greater psychological distress (Norton et al., 2005), decreased social role functioning (Figueiredo et al., 2004), and higher rates of post-traumatic stress disorder (PTSD) and post-traumatic stress symptoms (PTSS) in children with cancer (Bruce, 2006).
Diminished Ability to Manage Illness
The outcomes noted above are problematic in and of themselves, but they may also decrease individuals’ ability to take the actions necessary to adhere to treatment, change health behaviors, and otherwise manage their illness. Individuals with greater social support are more likely to engage in health-promoting behaviors and exhibit healthy physiological functioning (IOM, 2001). In a meta-analysis of studies of predictors of positive health practices, loneliness and degree of perceived social support were found to have the largest effects (in the expected direction) on the performance of healthy behaviors (Yarcheski et al., 2004).
Insufficient Financial and Other Material Resources
Multiple studies have shown that low income is a strong risk factor for disability, illness, and death. Inadequate income limits one’s ability to avoid stresses that can accompany everyday life and to purchase food, medications, transportation, and health care supplies necessary for health and health care (Kelly et al., 2006). To take just one example, lack of transportation to get to medical appointments, the pharmacy, the grocery store, health education classes, peer support meetings, and other out-of-home health resources can hinder health monitoring, illness management, and health promotion.
As discussed in Chapter 1, in 2003 nearly one in five people in the United States with chronic conditions3 lived in families that had problems paying medical bills (Tu, 2004); 63 percent of these individuals also reported problems paying for housing, transportation, and food (May and Cunningham, 2004). Among the privately insured with problems paying medical bills, 10 percent went without needed medical care, 30 percent delayed care, and 43 percent failed to fill needed prescriptions because of cost concerns (Tu, 2004). Overall, 68 percent of families with problems paying medical bills had problems paying for other necessities, such as food and shelter (May and Cunningham, 2004). Such families may trade off medical care so they can fulfill basic needs.
The 2006 National Survey of U.S. Households Affected by Cancer similarly found that 8 percent of families having a household member with cancer delayed or did not receive care because of the cost of care. Of those without health insurance, more than one in four delayed or decided not to get treatment because of its cost, and 41 percent were unable to pay for basic necessities (USA Today et al., 2006). A longitudinal study of a cohort
of 860 men being treated for prostate cancer found that even after controlling for state of disease at the start of treatment, type of treatment, and other possible influential variables, men without health insurance achieved lower physical functioning, had more role limitations, and experienced poorer emotional well-being over time than men with health insurance. The researchers concluded that “patients undergoing aggressive treatment, which can itself have deleterious effects on quality of life, are exposed to further hardships when they do not have comprehensive health insurance upon which to support their care” (Penson et al., 2001:357). The adverse effects of no or inadequate insurance contribute to poorer health prior to the receipt of health care; undermine the effectiveness of care by increasing the chances of delayed or no treatment and the inability to obtain needed prescription medications; and contribute to worse outcomes of medical treatment for people with cancer and other diseases (IOM, 2002; Tu, 2004; IOM and NRC, 2006).
Emotional Distress and Mental Illness4
As discussed in Chapter 1, psychological distress is common among individuals with cancer. However, mental health problems and other types of psychological distress (which sometimes predate illness) (Hegel et al., 2006) are not unique to patients with cancer. People with chronic conditions such as diabetes, heart disease, HIV-related illnesses, and neurological disorders also are found to have high rates of depression, adjustment disorders, severe anxiety, PTSS or PTSD, and subclinical emotional distress (Katon, 2003). In a British sample of older adults living in the community, the development of serious physical illness in the respondent was frequently associated with the development of new-onset major depression (Murphy, 1982). A more recent longitudinal study in Canada found an increased risk of developing major depression to be associated with virtually any long-term medical condition (Patten, 2001). Most recently, an 8-year study followed a nationally representative sample of more than 8,000 U.S. adults aged 51–61 living in the community (and with no symptoms of depression at the start of the study) to examine the extent to which they developed symptoms of depression after a new diagnosis of several illnesses—cancer (excluding minor skin cancers), diabetes, hypertension, heart disease, arthritis, chronic lung disease (excluding asthma), or stroke. Those receiving
a diagnosis of cancer were at the highest risk of developing symptoms of depression within 2 years (13 percent incidence), with more than triple the risk of all others combined (Polsky et al., 2005). (Those with a diagnosis of chronic lung disease, heart disease, and stroke also had higher-than-average rates of depressive symptoms.)
Depressed or anxious individuals with a variety of comorbid general medical illnesses (including cancer) report lower social functioning, more disability, and greater overall functional impairment than patients without depression or anxiety (Katon, 2003). Distressed emotional states also often generate additional somatic problems, such as sleep difficulties, fatigue, and pain (Spitzer et al., 1995; APA, 2000), which can confound the diagnosis and treatment of physical symptoms. Among patients with a variety of chronic medical conditions other than cancer, those with depressive and anxiety disorders have significantly more medically unexplained symptoms than those without depression and anxiety, even when severity of illness is controlled for. Patients with depressive and anxiety disorders also have greater difficulty learning to live with chronic symptoms such as pain or fatigue; data suggest that depression and anxiety are associated with heightened awareness of such physical symptoms. Multiple studies of patients with major depression have also found higher-than-normal rates of unhealthy behaviors such as smoking, sedentary lifestyle, and overeating (Katon, 2003). Depression is associated as well with poor adherence to prescribed treatment regimens (DiMatteo et al., 2000).
Impaired Adherence to Medical Regimens and Behavior Changes Designed to Improve Health
While serious health events can trigger health-damaging behaviors—such as use of substances and consumption of unhealthful foods—as individuals cope with the distress associated with the illness, they can also motivate people to take up a number of health-promoting behaviors (McBride et al., 2003; Demark-Wahnefried et al., 2005). One study, for example, found that 6 months after surviving a heart attack, 17 percent of patients were engaged in four health-promoting behaviors (refraining from smoking, weight reduction, sufficient physical activity, and consumption of a low-fat diet), compared with just 3 percent of patients at baseline (Salamonson et al., 2007). Another study found that following HIV diagnosis, 43 percent of individuals reported increased physical activity and 59 percent improved diet (Collins et al., 2001). In general, research indicates that following a cancer diagnosis, many patients engage in behaviors such as stress management, quitting smoking, aerobic exercise, and major dietary change (Blanchard et al., 2003; Ornish et al., 2005; Andrykowski et al., 2006; Rabin and Pinto, 2006; Humpel et al., 2007). One study found
that following a cancer diagnosis, as many as half of those who smoked quit (Gritz et al., 2006). The concept of “teachable moments” has been used to explain how, after experiencing health events such as serious illness, people are motivated to take up health-promoting behaviors (McBride et al., 2003; Demark-Wahnefried et al., 2005).
Over the course of many serious acute and chronic conditions, however, patients’ adherence to health professionals’ recommendations for improved health can be quite low. And despite motivation, changes in actual health behaviors do not always come about or persist. For example, dozens of studies have found more than 30 percent nonadherence to dialysis, dietary and fluid restrictions, and transplant management in patients with end-stage renal disease, diabetes, and lung disease. In patients with cardiovascular disease, nonadherence to lifestyle changes, cardiac rehabilitation, and medication regimens is almost 25 percent. In patients with HIV, nonadherence to highly active antiretroviral treatment regimens and behavior change is 11.7 percent (DiMatteo, 2004). Similar rates of nonadherence have been observed in cancer patients despite the importance to survival and better health care outcomes of adhering to a treatment regimen. More than 20 percent of cancer patients have been found to be nonadherent to a variety of treatments, including oral ambulatory chemotherapy, radiation treatment, and adjuvant therapy with tamoxifen (Partridge et al., 2003; DiMatteo, 2004). For adjuvant tamoxifen, for example, adherence can be as low as 50 percent after 4 years of treatment (Partridge et al., 2003). One study of the natural progression of exercise participation after a diagnosis of breast cancer found that women did not significantly increase their levels of exercise over time and were in fact exercising below recommended levels despite their expressed intentions otherwise (Pinto et al., 2002). As discussed below, depression and other adverse psychological states can thwart adherence to treatment regimens and behavior change in a number of ways, for example, by impairing cognition, weakening motivation, and decreasing coping abilities.
To achieve healthy lifestyles and manage chronic illness effectively, patients must first understand what they need to do to care for themselves. The necessary information may come from many sources, including the media, family members, and health professionals, and may include, for example, reasons for needed chemotherapy, the exact ways in which medication should be administered, and the importance of sleep and a good diet. Distressed psychological states can seriously challenge the cognitive functioning and information processing required to understand treatments and organize health behaviors. Stress, anxiety, anger, and depression can
impair the ability to learn and maintain new behaviors (Spiegel, 1997) or to undertake complex tasks that require planning and behavioral execution (Wells and Burnam, 1991; Olfson et al., 1997).
For example, research on kidney transplant recipients’ adherence to immunosuppressive medication has found that patients with poor adherence report higher levels of psychological distress relative to patients with good adherence (Achille et al., 2006). Patients undergoing dialysis treatment for end-stage renal disease have also been found to experience greater cognitive impairment and dysfunction due to depressive mood (Tyrrell et al., 2005). Disturbance of mood and motivation in HIV-positive individuals has been associated with decrements in several cognitive factors, such as neurocognitive performance, verbal memory, executive functioning, and motor speed (Castellon et al., 2006). Among patients with advanced cancer, depression and anxiety similarly have been found to contribute to cognitive impairments (Mystakidou et al., 2005). Even after controlling for the effects of pain and illness severity, anxiety and depression among patients with cancer have been independently associated with decreased cognitive functioning (Smith et al., 2003).
Moreover, when patients are distraught about the course of their illness, they may be more likely to forget health professionals’ recommendations and less likely to ask questions about their care and participate in medical visits (Robinson and Roter, 1999; DiMatteo et al., 2000; Katon et al., 2004; Sherbourne et al., 2004). Lower levels of patient participation are associated with poorer health behaviors (Martin et al., 2001).
Distressed psychological states can limit patients’ concern about the importance of their health behaviors and contribute to their belief that the benefits of adherence are not worth the trouble (Fink et al., 2004). Distressed psychological states can also lead to diminished self-perceptions and limitations in personal self-efficacy,5 which in turn negatively affect health behaviors and adherence. Pessimism about the future and about oneself can forestall the adoption of new health practices and interfere with health behaviors and adherence (Peterman and Cella, 1998; DiMatteo et al., 2000; Taylor et al., 2004). Limitations in personal self-efficacy that derive from both anxiety and depression can interfere with the behavioral commitment essential to the adoption and maintenance of new health practices. Distressed psychological states can also amplify somatic symptoms, causing
As discussed in Chapter 1, self-efficacy is defined as the belief that one is capable of carrying out a course of action to reach a desired goal (Bandura, 1997).
additional functional disability and further reducing patients’ motivation to change behavior.
Less Effective Coping
Self-efficacy and emotional resilience contribute to greater engagement in health-promoting behaviors, including adherence to treatment regimens. Conversely, these behaviors can be undermined by ineffective coping with psychological distress. Optimism and positive coping also have been explored as mechanisms through which ill individuals can become more emotionally resilient and better able to cope with and manage the course of their disease. Coping (which involves seeking of social support, positive reframing, information seeking, problem solving, and emotional expression) can bolster one’s adjustment to chronic illness (Holahan et al., 1997), and improving patients’ coping strategies can be effective in reducing symptoms of psychological distress that hinder health behaviors and the management of illness (Barton et al., 2003). For patients with cancer, optimism also predicts improved quality of life and functional status and the effective management of pain (Astin and Forys, 2004).
Finding meaning in the illness experience is another coping mechanism that can improve a patient’s psychological adjustment (Folkman and Greer, 2000), contributing to a greater sense of control, improved psychological adjustment, and more positive focus (Fife, 1995). As many as 83 percent of patients with breast cancer come to realize at least one benefit following their diagnosis (Sears et al., 2003); such a realization involves positive reappraisal of their situation and results in better coping, mood, and health status. Research on patients with tuberculosis in South Africa found a significant relationship between assessment of meaning in life and adherence to treatment for the disease (Corless et al., 2006). Finding benefit also is linked to patients’ adherence to antiretroviral therapy for HIV (Stanton et al., 2001; Luszczynska et al., 2006).
Conversely, coping mechanisms that are less adaptive can help in dealing with the immediate emotional distress associated with illness but create longer-term problems. Avoidant coping, which involves denial, emotional instability, avoidant thinking (avoiding thoughts about the reality of the illness), and immature defenses, is associated with less engagement in healthy behaviors (e.g., healthy diet, exercise, adherence to treatment), as well as the adoption of unhealthful behaviors (e.g., smoking, drinking alcohol to excess, abusing psychotropic medications) in an effort to cope with emotional distress (Stanton et al., 2007). Avoidant thinking about the illness is considered “harmful coping” because problems are not faced and solutions are not found, contributing to unhealthy behaviors and nonadherence (Carver et al., 1993).
ALTERATIONS IN BODY FUNCTIONING DUE TO STRESS6
Psychological stress arises from the interaction between the individual and the environment. It is said to occur when environmental demands (stressors) exceed the individual’s capacity to deal with those demands (Lazarus and Folkman, 1984; Cohen et al., 1995). Stress is thought to exert its pathological effects on the body and increase the risk of disease in part by encouraging maladaptive behaviors as described above. People often cope with the negative emotions elicited by stress through behaviors that bring short-term relief but carry long-term risk. Under stress, people generally smoke more, drink more alcohol, eat foods with a higher fat and sugar content, and exercise less (Conway et al., 1981; Cohen and Williamson, 1988; Anderson et al., 1994). They also tend to have less and poorer-quality sleep (Akerstedt, 2006).
In addition, stress is thought to influence the pathogenesis or course of physical disease more directly by causing negative affective states, such as anxiety and depression, which in turn exert direct effects on biological processes that stimulate and dysregulate certain physiological systems in the body. The immune, cardiovascular, and neuro-endocrine systems are well-known respondents to stress (IOM, 2001). Long-term stressful circumstances that reduce perceptions of control and increase feelings of helplessness, hopelessness, and anxiety damage health and can lead to premature death, in part because of the immune, cardiac, and other physiological responses they produce (WHO, 2003). Individuals are even more vulnerable to the adverse physiological effects of stress when they are exacerbated by other psychosocial factors (e.g., a weak social network) or the individual has inadequate psychosocial assets to buffer the effects of exposure to stress.
Links Between Stress and Disease
There is strong evidence that chronic stress influences the development and/or progression of certain illnesses, including major depression, heart disease, HIV-related illnesses, and (to a lesser extent) cancer.
Substantial research links stressful life events to both diagnosed depression and depressive symptoms (Monroe and Simons, 1991; Kessler, 1997; Mazure, 1998; Hammen, 2005). One study found that during the 3–6
months preceding the onset of their depression, 50–80 percent of depressed persons had experienced a major life event, compared with only 20–30 percent of nondepressed persons evaluated during the same time period (Monroe and Simons, 1991). Approximately 20–25 percent of people who experience major stressful events develop depression (van Praag et al., 2004). Moreover, there is consistent evidence that severe events are more strongly associated with the onset of depression than are nonsevere events, and that there may be a dose-response relationship between the severity of major life events and the likelihood of depression onset (Monroe and Simons, 1991; Kessler, 1997). In general, major life events that are undesirable and uncontrollable, such as bereavement or job loss, are the most likely to be associated with depression (Mazure, 1998). Life-threatening illnesses have also been associated with an increased risk of depression (Dew, 1998). The greatest prevalence of depression in chronically ill patients is reported among those with greater pain, higher levels of physical disability, and more severe illness (Krishnan et al., 2002).
Prospective research conducted among initially healthy populations provides considerable support for a link between stress and incident cardiovascular disease (CVD) (Rozanski et al., 1999; Krantz and McCeney, 2002; Belkic et al., 2004). Research examining the influence of chronic psychosocial stress on the risk of recurrent events among persons with preexisting CVD is not as extensive. However, findings from this literature further suggest that exposure to chronic or ongoing psychosocial stress may play a role in worsening disease prognosis among persons with a known history of CVD. Perceived life stress (Ruberman et al., 1984), excessive demands at work (Hoffmann et al., 1995), marital distress (Orth-Gomer et al., 2000; Coyne et al., 2001), and social isolation (Mookadam and Arthur, 2004) each have been related to poor CVD outcomes (i.e., recurrent events and/or mortality) among persons with preexisting CVD. In addition, short-term stressful events and episodes of anger have been shown to precipitate clinical manifestations of coronary artery disease such as myocardial infarction (Rozanski et al., 1999; Krantz and McCeney, 2002). Reviews of prospective studies generally conclude that depression is an important risk factor both for onset of CVD among initially healthy persons (Rugulies, 2002; Wulsin and Singal, 2003; Frasure-Smith and Lesperance, 2005) and for worsening prognosis among CVD patients (Barth et al., 2004; van Melle et al., 2004; Bush et al., 2005). Several studies have also shown that social support is associated with lower resting and ambulatory blood pressures (Uchino et al., 1999; Ong and Allaire, 2005)—a factor reducing the risk of
the development of heart disease and lower atherosclerosis (Uchino, 2006) and the progression of cardiac disease once diagnosed.
The typical clinical course of HIV infection is a gradual progression from an initial asymptomatic phase, to a symptomatic phase, to the onset of AIDS (CDC, 1992). Individuals differ with respect to the rate at which they progress through these phases. Some remain asymptomatic for extended periods of time and respond well to medical treatment, whereas others progress rapidly to the onset of AIDS, and suffer numerous complications and opportunistic infections (Kopnisky et al., 2004). It has been suggested that psychosocial factors, including stress and depression, may account for some of this variability (Kiecolt-Glaser and Glaser, 1988; Kopnisky et al., 2004; Pereira and Penedo, 2005).
Although the evidence published before 2000 for the influence of stress on progression through the clinical phases of HIV infection was inconsistent (Cohen and Herbert, 1996; Nott and Vedhara, 1999), several studies did report associations between stress due to negative life events and more rapid HIV progression (Goodkin et al., 1992; Kemeny and Dean, 1995; Evans et al., 1997). Studies published since 2000 have been more consistently supportive of such a link (Pereira and Penedo, 2005).7 Evidence also suggests that an accumulation of negative life events over several years of follow-up predicts more rapid progression to AIDS (Leserman et al., 2002). Moreover, stress has been found to influence the course of specific conditions (especially virus-initiated illnesses), to which persons with HIV are especially susceptible (Pereira et al., 2003a,b).
The literature is less clear with regard to the effects of stressful life events on the incidence of cancer. Studies of the effects of stress on the
onset of cancer are inconsistent; results range from no association to a strong association (Fox, 1989; Petticrew et al., 1999; Turner-Cobb et al., 2001; Duijts et al., 2003; Heffner et al., 2003; Walker et al., 2005). These conflicting findings are due in no small part to methodological limitations of this work. Some of these limitations have to do with the measurement of biological processes; newer studies are finding more linkages between stress and biological processes that may serve as mechanisms in tumor development and growth. Other limitations derive from problems in the measurement of exposure to stress and of disease outcomes. Because the incidence literature is based primarily on measures of stressful life events, associations could be obscured by the fact that those who can cope effectively with such events are less subject to disease (Eysenck, 1988; Giese-Davis and Spiegel, 2003). On the other hand, most cancers develop over many years and are diagnosed only after developing for 2–30 years, arguing against an association between recent stressful events and the onset of cancer (National Cancer Institute, 2007).
It is generally accepted that stress is more likely to influence the progression and recurrence of cancer than the initial onset of the disease (Thaker et al., 2007). This assumption is based largely on evidence that stress and depression can influence immunocompetence, and that the immune system plays an important role in tumor surveillance and growth (Cohen and Rabin, 1988; Anderson et al., 1994; Turner-Cobb et al., 2001). Yet even research in these areas has produced inconsistent results (Cohen and Herbert, 1996; Giese-Davis and Spiegel, 2003; Walker et al., 2005). The lack of impressive data on psychological stress and depression as risks for the onset, progression, or recurrence of cancer is at least partly attributable to the practical difficulties of designing and implementing adequate studies. For example, in the interest of maximizing power, studies frequently combine multiple types of cancers. Such an approach makes it difficult to interpret results, as it is likely that stress may influence the development of some types of tumors (e.g., those caused by viruses or subject to endocrine regulation) but not others. Despite the less clear evidence to date on the effect of stress on cancer, growing knowledge about the effects of stress on body function—in particular on the functioning of the immune system—adds to suspicions about the potential adverse effects of stress on the progression of some types of cancer.
Effects of Stress on Organ Systems
Although epidemiologic studies conducted to date are inconclusive about the effects of stress on the development and progression of cancer, evidence emerging from the science of psychoneuroimmunology—the study
of the interactions among behavior, the brain, and the body’s immune system—shows that psychological and social stressors can interfere with the working of the body’s organ systems, in particular the neuro-endocrine and immune systems.8 These effects are thought to mediate the influence of psychosocial stressors on health in general and could potentially play a role in the progression of cancer.
The body’s sympathetic-adrenal medullary (SAM) system and the hypothalamic-pituitary-adrenocortical (HPA) axis are two neuro-endocrine systems that are highly responsive to psychological stress. The SAM system reacts to stress in part by increasing the production of certain hormones called catecholamines. In HPA stimulation, the pituitary gland secretes a hormone that activates the adrenal gland to secrete additional hormones called glucocorticoids (primarily cortisol in humans). Although the release of these hormones is a healthy response to an environmental stressor, their excessive or prolonged production under ongoing stressful conditions is associated with impaired functioning or dysregulation of various organs and organ systems (McEwen, 1998; Antoni and Lutgendorf, 2007). These effects can have a cascading effect on the immune system (Kielcolt-Glaser et al., 2002).
Immune system processes play a central role in protecting against infectious diseases, autoimmune diseases, coronary artery disease, and at least some cancers by identifying organisms and cells that are atypical, attacking them, and preventing their replication. Under chronic stress, however, key immune system functioning can be disrupted. Chronic stress, depression, inadequate social support, and other psychosocial stressors can create disequilibrium in immune system functioning by either overstimulating some immune system functions or suppressing others (Miller et al., 2007). For example, the unbalanced production of certain proteins (cytokines) that help regulate the body’s immune system can create a pathological state of inflammation that has been linked to certain cancers, as well as a number of chronic conditions, such as CVD, arthritis, type 2 diabetes, and frailty and functional decline in older adults (Kielcolt-Glaser et al., 2002; Antoni et al., 2006). Prolonged exposure to cortisol and catecholamines under chronic stress also can adversely affect cellular replication and several regulators of cell growth. Some of these observed effects on cancer cells—such as accelerating tumor growth, enhancing tumor metabolism, assisting tumor cells in migrating and adhering to a distant site, increasing blood vessel growth in tumors, and helping tumors evade the immune system’s natural killer
(NK) cells9—could help cancer to progress (Antoni and Lutgendorf, 2007; Thaker et al., 2007).
Multiple studies have shown that positive social support, in particular the provision of emotional support, is related to better immune system functioning and resistance to disease (Uchino et al., 1996; IOM, 2001; Uchino, 2006). In women with ovarian cancer, higher levels of social support predicted higher levels of NK cell activity, while patients with greater distress had more impaired NK cells (Lutgendorf et al., 2005).10 Findings from two randomized controlled trials of psychosocial interventions in breast cancer patients also found improvements in immune system functioning using a variety of measures of immune system competency (Andersen et al., 2004; McGregor et al., 2004).
Studies with animals also have found increased stress to be associated with higher levels of stress hormones (catecholamines) and increased tumor mass and metastases (Thaker et al., 2007). For example, mice with mammary tumors randomly assigned to more stressful housing conditions showed greater tumor growth as well as shorter survival following chemotherapy (Kerr et al., 1997; Strange et al., 2000). Higher levels of certain pro-inflammatory cytokines (interleukin) also have been found in people living in high-stress situations, for example, female caregivers of relatives with Alzheimer’s disease compared with community controls (Lutgendorf et al., 1999).
Although more research is needed to understand the extent to which, and how, these stress-induced physiological changes can influence cancer, it is clear that stress can induce pathology in several aspects of body function that affect health. Research findings also indicate that stress, mood, coping, social support, and psychosocial interventions affect neuro-endocrine and immune system activity and can influence the underlying cellular and molecular processes that facilitate the progression of cancer. Findings also suggest the plausibility of improving the health status of cancer patients by attending to their psychosocial distress (McEwen, 1998; Antoni and Lutgendorf, 2007; Thaker et al., 2007). For all these reasons, psychosocial stressors should not be ignored in the delivery of high-quality health care for people living with cancer.
ADVERSE EFFECTS ON FAMILIES AND THE LARGER COMMUNITY
Failure to attend to patients’ psychosocial needs can have ripple effects throughout the family, and may also affect the larger community. Some of these effects can rebound and create additional psychosocial problems for the patient.
Adverse Effects on Families
As described in Chapter 1, family members of patients with cancer experience higher-than-normal stress for multiple reasons, including fear of losing their loved one, concern about the suffering of their family member, and the additional demands of providing emotional and logistical support and hands-on care during times of acute illness (Hodges et al., 2005; Kotkamp-Mothes et al., 2005). Further, when loved ones experience acute or long-term inability to care for themselves or carry out their familial roles, family members often must assume these roles.
Providing this emotional, logistical, and hands-on care and assuming roles previously carried out by the patient require considerable adaptation (and readaptation as the course of the disease changes) on the part of family members. These experiences can add to the stress resulting from concern about the ill family member. This cumulative stress, especially in caregivers compromised by morbidity accompanying their own aging (Jepson et al., 1999), can be so substantial that family members acting as caregivers themselves have an increased likelihood of experiencing depression, other adverse health effects, and earlier death (Schultz and Beach, 1999; Kurtz et al., 2004).
Moreover, high stress levels in caregivers can interfere with their ability to provide the emotional or logistical support patients need. Problematic family relationships that predate the onset of cancer also can lead to inadequate support from the family (Kotkamp-Mothes et al., 2005). Both of these situations can exacerbate the patient’s stress, which in turn can contribute to the patient’s poorer adjustment to the illness. Thus, attending to the needs of the families of patients not only will benefit family members, but also may help patients with their own emotional responses and management of their disease.
Adverse Effects on the Larger Community
As described in Chapter 1, a significant percentage of adults stop working or experience a change in employment (reduction in work hours, interruption in work, change in place of employment) subsequent to a
diagnosis of or treatment for cancer (IOM and NRC, 2006), with implications for their own lives and income. The evidence is not clear as to factors that do and do not affect survivors’ return to work (Spelten et al., 2002). Nonetheless, to the extent that unaddressed mental health problems such as depression or other psychosocial problems associated with their disease affect patients’ desire to continue or return to work or impair their performance on the job, they, their families, and the workplace will be adversely affected financially. Additionally, to the extent that caregivers give up work outside of the home or reduce their work hours to provide care to a loved one, workplace productivity will decrease.
Mental health problems associated with cancer may also have adverse financial effects on the larger economy and on health care providers. However, with respect to effects on the larger economy, the financial costs of failing to deliver psychosocial health services to individuals with cancer have not been studied. Studies that have attempted to quantify the impact of mental health problems on the cost of medical care have been based on the effect of depression and/or anxiety on those with medical illnesses other than cancer (Simon et al., 1995, 2002; Henk et al., 1996). Issues pertaining to reimbursement of psychosocial health services are addressed in Chapter 6.
Having examined the evidence presented in Chapter 1 about the prevalence of psychosocial problems among people with cancer and the extent to which those problems are unaddressed by health care providers, as well as the evidence reviewed in this chapter about how psychosocial problems can adversely affect health, the committee concludes that all cancer patients and their families are at heightened risk for emotional suffering, diminished adherence to treatment, impaired work and social functioning, and as a result, additional threats to their health beyond those directly imposed by their cancer. As many prior studies on disparities in health care have documented (IOM, 2003; Maly et al., 2006), these risks are greater in populations already experiencing such social stressors as poverty, limited education, language barriers, and/or membership in an ethnic or cultural minority.
Failing to address these risks can adversely affect individuals with many different types of illness. However, the trajectory of cancer often poses both an immediate threat to life and threats to lifelong physical, psychological, and social functioning as a result of the chronic physical and psychological impairment and disability that can result from both the illness and its treatment. Moreover, treatment for many cancers can itself be life-threatening.
These multiple threats make attention to psychosocial problems in cancer patients and their families critically important. Although reducing psychosocial stressors and improving psychosocial services may not increase cancer “cure rates,” the committee concludes that
Addressing psychosocial needs should be an integral part of quality cancer care. All components of the health care system that are involved in cancer care should explicitly incorporate attention to psychosocial needs into their policies, practices, and standards addressing clinical medical practice. These policies, practices, and standards should be aimed at ensuring the provision of psychosocial health services to all patients who need them.
Essential to this conclusion—and to this study overall—is the definition of “psychosocial health services” developed by the committee:
Psychosocial health services are psychological and social services and interventions that enable patients, their families, and health care providers to optimize biomedical health care and to manage the psychological/behavioral and social aspects of illness and its consequences so as to promote better health.
Several aspects of this definition merit discussion. First, a wide variety of psychological and social services are delivered by providers of health and human services. The committee uses the term “psychosocial health services” to distinguish psychological/behavioral and social services that are delivered to improve health and health care from psychosocial services provided to achieve other goals. For example, psychosocial services are provided in the child welfare and criminal/juvenile justice systems to meet such goals as strengthening a family or preventing incarceration or reincarceration. These are psychosocial services, but generally are provided outside of the health care system, and in such settings are not thought of as health care services. While a particular psychosocial service, such as mental health care, can be delivered in more than one sector to help achieve multiple goals (e.g., improved health and prevention of incarceration), when psychosocial services are proposed as worthy of attention from the health care system, the intended effects on health and health care services should be clear. By adopting the terminology of psychosocial health services, the committee aims to define psychosocial services in a way that recognizes the legitimate and sometimes different purposes of such services across different health and human service sectors, while simultaneously establishing an expectation for efficacy and effectiveness in improving health or health care. Second, the committee’s definition of psychosocial health services distinguishes between services directly needed by the patient (e.g., treatment for depression or financial assistance) and the interventions or strategies used to secure those services (e.g., screening, formal referral, or case management). This distinction is elaborated in Chapters
Some might question whether effective psychosocial health services exist, exist in sufficient quantity, and are accessible to patients, and whether aiming to ensure the provision of psychosocial health services to all patients in need is a feasible goal for oncology providers. Moreover, some might question whether it is worthwhile to identify and attempt to address psychosocial problems through means not typically thought of as medical services, given that some psychosocial problems, such as poverty, are not resolvable. There are several reasons why the committee believes this to be a reasonable aim.
In the next chapter, the committee documents the finding of another recent IOM report on cancer—that a “wealth” of cancer-related community support services exists, many of which are available at no cost to patients (IOM and NRC, 2006:229). The committee also notes that tools and techniques needed to identify and address psychosocial problems already exist and are in use by leading oncology providers. Although these tools and techniques have not yet been perfected, and there is not currently as ample a supply of psychosocial services as would be necessary to meet the needs of all patients, the committee describes in the next three chapters psychosocial services, tools, and interventions that do exist and are being used to help patients manage their cancer, its consequences, and their health.
The committee urges all involved in the delivery of cancer care not to allow the perfect to be the enemy of the good. There are many actions that can be taken now to identify and deliver needed psychosocial health services, even as the health care system works to improve their quantity and effectiveness. The committee believes that the inability to solve all psychosocial problems permanently should not preclude attempts to remedy as many as possible—a stance akin to oncologists’ commitment to treating cancer even when the successful outcome of every treatment is not assured.
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