|NCI/PDQ® Health professionals: Adjustment to Cancer: Anxiety and Distress (PDQ®)|
|National Cancer Institute|
| Last Modified: June 14, 2012
Studies examining the prevalence of mental disorders in cancer 1 2 show that most cancer patients do not meet the diagnostic criteria for any specific mental disorder; however, many patients do experience a variety of difficult emotional responses. 3 To effectively match patient needs and treatment interventions, health care professionals must be able to distinguish the periodic difficulties that characterize normal adjustment from more serious mental disorders.
Psychosocial distress exists on a continuum (see figure below) ranging from normal adjustment issues through the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) Adjustment Disorders; 4 to a level close to, but below, the threshold (i.e., meets some diagnostic criteria but not all) of diagnosable mental disorders; to syndromes that meet the full diagnostic criteria for a mental disorder (e.g., major depressive disorder). This summary focuses primarily on the less severe end of this continuum: the normal adjustment issues, psychosocial distress, 5 the adjustment disorders, and cancer-related anxiety. (Refer to the PDQ® summaries on Depression and Post-traumatic Stress Disorder for more information.)
Anxiety is often manifested at various times during cancer screening, diagnosis, treatment, or recurrence. It can sometimes affect a person's behavior regarding his or her health, contributing to a delay in or neglect of measures that might prevent cancer. 6 7 8 For example, when women with high levels of anxiety learn that they have a genetically higher level of risk of breast cancer than they had previously believed, they might perform breast self-examination less frequently. 9
For patients undergoing cancer treatment, anxiety can also heighten the expectancy of pain, 10 11 12 other symptoms of distress, and sleep disturbances and can be a major factor in anticipatory nausea and vomiting. Anxiety, regardless of its degree, can substantially interfere with the quality of life of patients with cancer and of their families and should be evaluated and treated. 13 14 15
In this summary, unless otherwise stated, evidence and practice issues as they relate to adults are discussed. The evidence and application to practice related to children may differ significantly from information related to adults. When specific information about the care of children is available, it is summarized under its own heading.
Adjustment or psychosocial adaptation to cancer has been defined 1 2 3 4 5 as an ongoing process in which the individual patient tries to manage emotional distress, solve specific cancer-related problems, and gain mastery or control over cancer-related life events. Adjustment to cancer is not a unitary, single event but rather a series of ongoing coping responses to the multiple tasks associated with living with cancer. Patients are faced with multiple challenges that vary with the clinical course of the disease. Common periods of crisis and significant challenge include the following:
Each of these events has certain coping tasks, particular existential questions, many common emotional responses, and specific problems.
Normal or successful adjustment is indicated in patients who are able to minimize disruptions to life roles, regulate emotional distress, and remain actively involved in aspects of life that continue to hold meaning and importance. 5
Coping refers to the specific thoughts and behaviors a person uses in his or her efforts to adjust. 2 Coping style refers to the most common, more frequent, and longer-term style of coping that an individual tends to use across a variety of life situations. One's coping style is often closely related to one's overall disposition and personality (e.g., optimism, pessimism, introversion, extroversion). 7
Coping strategies refer to those less frequently used and more situation-specific coping efforts, such as readjusting one's daily routine or work schedule to adjust to the side effects of cancer treatment. Coping strategies are engaged in an effort to adjust. Although there are many successful coping strategies, three broad categories have been noted: 2 8 9 10
Problem-focused strategies help patients manage specific problems by directly trying to alter problem situations. Emotion-focused strategies help a person regulate his or her degree of emotional distress, and meaning-focused strategies help patients understand why this has happened and what impact cancer will have on their life. In general, persons who adjust well typically remain committed and actively engaged in the process of coping with cancer and continue to find meaning and importance in their lives. Conversely, persons who do not adjust well often become disengaged, withdraw, and feel hopeless. Thus, assessing the degree of engagement versus giving up may be a way to distinguish between successful and unsuccessful adjustment. 5
For example, in a correlational study of adolescent cancer patients and their parents, engagement coping by the adolescent (including cognitive restructuring, seeking social support, expressing emotions, and problem solving) was associated with lower levels of distress. Conversely, disengagement coping by parents (including problem avoidance, wishful thinking, social withdrawal, and self-criticism) was associated with increased distress. 11
In a prospective investigation of different types of problem-focused coping strategies,146 women with early-stage breast cancer were studied. Study results showed that a strategy of concentrating on symptoms, measured at the end of treatment, was predictive of less improvement in physical and mental quality of life at 6 months' follow-up, while a strategy of information seeking was associated with greater improvement in physical quality of life. These findings suggest that problem-focused coping consists of a variety of specific coping strategies, some of which may be beneficialand some of which may not be beneficialto quality of life. 12
One criticism of the literature on coping with cancer focuses on the assumption that coping with cancer is a single unitary event. In reality, coping with cancer involves coping styles and strategies that may differ and vary according to the nature of the stressors being encountered. For example, in a study of 52 adults receiving palliative care for cancer, 13 patients participated in a semistructured interview during which they were asked about their most significant stressors and how they coped with these stressors. Three stressor domains were identified:
Results showed that most participants used a range of coping strategies; however, there were interactions between stressor domains and coping categories. Problem-focused strategies were used less frequently for the existential stressors, while emotion-focused strategies were used less frequently for the physical stressors. 13
One cognitive theory of coping 14 proposes that in response to significant life events, a person asks two important questions:
When an event is perceived to be of personal significance (nearly all cancer-related life events would be), and when one's personal resources are perceived to be inadequate to the demands of managing the event, distress can occur. One way to conceptualize the amount of distress experienced by patients is the balance or ratio between perception of the demands that a situation (e.g., chemotherapy) places upon them and perception of the resources they possess (e.g., effective antiemetics) to effectively manage these demands:
Distress = Perceived Demands/Perceived Resources
Individuals with the same diagnosis or treatment regimen may experience very different levels of distress. A high level of distress could result from an individual's perceptions that either the demands of a situation are very high or his or her resources are very low (or both). Conversely, low distress is the result of a perception that either the demands of a situation are very low or the individual's resources are high. 15 To lower distress, therefore, either the perceived demands of the situation should be lowered, or the perceived resources should be increased.
Although there are some commonalities in normal adjustment to the varying stressors of cancer, there are also many individual differences. It is difficult to predict how individuals will cope with cancer, so it is important to recognize factors that influence adjustment to cancer. One study of women with stage II or III breast cancer 16 reported that higher levels of stress measured postsurgically at the time of diagnosis predicted lower physical and psychological quality of life. The stress measures included the following:
All measures were predictive. 16
Another study evaluated women with stage 0 breast cancer to stage III breast cancer (N = 89) at three time points: during treatment, at 3 weeks following end of treatment, and at 3 months posttreatment. Most survivors showed good adjustment on general distress indices. The factors predicting sustained distress included young age, history of depression or anxiety, and more extensive treatment. Younger age was the only factor that predicted greater distress across all evaluated measures. 17
Psychosocial adjustment/adaptation has been determined to be influenced by three broad categories of factors: cancer derived, patient derived, and society derived. 4 18 Cancer-derived factors include the following:
Patient-derived factors also include consideration for stage of life 22 (i.e., developmental tasksyoung adults may respond quite differently from older adults).
Society-derived factors include the general societal views of cancer (e.g., stigma), as well as the influence society has on issues such as availability of treatments, open versus closed discussion of the illness, and popular beliefs about cause.
The personality traits of optimism and pessimism might play a critical role in the psychological well-being of cancer patients. A German study investigated the impact of optimism and pessimism on psychological well-being in 161 newly diagnosed cancer patients with heterogeneous cancers. 23 Patients were assessed for optimism/pessimism and positive/negative emotions before the start of their first chemotherapy session and at 9 months' follow-up. Before the start of chemotherapy, psychological well-being was associated with higher optimism and lower pessimism. Only pessimism predicted negative change in psychological well-being at the 9-month follow-up. Additionally, only pessimism predicted heightened perception of chemotherapy-related side effects.
The availability of social support, as part of a social network, has been found to be related to mortality from breast cancer. In a longitudinal study of 2,835 female nurses with breast cancer, those who, before diagnosis, reported no close contacts (e.g., relatives, friends, or living children) had a twofold increased risk of mortality from breast cancer, compared with those who had more social contacts (e.g., ten or more close relatives). This increased mortality was only found when comparing these two extremes in social ties, suggesting that women with relatively few social contacts or an intermediate number of contacts may not be at increased risk. Overall, these results suggest the important role of close relatives willing to step in and provide needed care. 19
The process of adjusting to cancer can begin even before a diagnosis. Patients may respond with normal levels of fear, worry, and concern when they have unexplained symptoms or when they realize that they are undergoing testing to determine the presence of cancer. When they hear the diagnosis, their fears become realized, generating a psychological and existential plight (crisis). 24 Many people wonder, Could I die from this?
Receiving a diagnosis of cancer results in a crisis that includes expected and normal emotional distress. One author 25 has described the normal responses to the crisis of cancer as consisting of three phases:
Phase I, the initial response, consists of disbelief, denial, and shock that the news is true. Some patients will attempt to prove that the diagnosis is not true (Are you sure you have the right test results?). Most patients will report a period of disbelief accompanied by an inability to clearly process information. They may feel numb or in shock, or as if, This can't be happening to me.
Such a high level of distress can be problematic because many times, immediately after informing patients of their diagnosis, physicians outline the treatment options. Under these emotional circumstances, many patients may be unable to understand or remember this important information. Thus, the presence of others or other means of being able to review the information can be extremely important (e.g., tape recording the discussion about the treatment plan or providing a second appointment at a later date, specifically for reviewing the treatment plan). Although there are many individual differences, this initial response of disbelief, denial, and shock usually lasts about a week in patients who adjust well.
Phase II, dysphoria, consists of a variable period of time (but usually lasting 12 weeks) during which the patient is slowly acknowledging the reality of the diagnosis. During this time patients will typically begin to experience a significant degree of distress in the form of depression, anxiety, insomnia, anorexia, poor concentration, and varying degrees of inability to function in daily roles. Intrusive thoughts of illness and death may occur very often and seem to be uncontrollable.
As more information about treatment options is provided, correctly processed, and understood, feelings of hope and optimism begin to emerge more frequently through the dysphoria. Distress levels can be elevated for newly diagnosed patients awaiting surgery. Additional professional support to address problems such as fatigue, insomnia, and depressed mood can be helpful during this time. 26
Phase III, longer-term adaptation, consists of the extended time during which more long-lasting and permanent adjustment occurs. This period consists of weeks and months. During this period, patients are utilizing a variety of coping strategies and styles. 9 Coping styles are longer-term, established ways for coping with many previous life events; coping strategies are situation-specific efforts to resolve particular cancer-related situations. This combination of longer-term coping styles and short-term coping strategies usually serves persons well in their efforts at adaptation. There is no single best way to cope. The individual differences persons bring to their encounters with cancer will result in varied coping styles and strategies. 5
During the active treatment phase of the illness, a patient's adjustment is focused primarily on coping with the many and varied stressors of treatment. These may include apprehension and fears about:
Patients who adjust well are able to tolerate these short-term stressors via a cost-benefit approach in which they weigh the discomforts of short-term loss against the benefits of long-term gains (e.g., increased survival) and conclude, It is worth it. 25 Questions that often occur during active treatment include the following:
As these and related questions arise, patients utilize coping styles and strategies to adapt. Although many different coping strategies are useful during this phase, problem-focused copingstrategies designed to manage specific problem situations (e.g., fatigue, transportation to treatments, altered work schedules, and role changes)are often utilized.
Before active treatments are completed, most patients look forward to the conclusion of treatment with positive anticipation and hopes of returning to normal. However, the completion of active treatment can be a time of great ambivalence for cancer patients and their families. The completion of treatments suggests a time of celebration and relief, yet it can also be a time of heightened distress, with a renewed sense of vulnerability that comes with the cessation of active medical efforts to fight the disease. 27
Those who adjust well are able to balance their positive expectations with the realities of ongoing fears and apprehensions. Many patients report enhanced anxiety and worry related to fears of recurrence and decreasing frequency of medical surveillance via less frequent physician contacts. Other adjustment issues include living with uncertainty, returning to previous life roles, and hypervigilance to health concerns. 6
During remission, patients begin a sequence of regular follow-up appointments with their oncologist. Normal anxiety and worry often intensify as the dates of follow-up appointments approach. Normal anxiety comes from concerns about recurrence and the related emotional consequences (e.g., re-entry into the patient role and renewed feelings of loss of control). 28 Many patients find waiting for test results to be a particularly distressing experience.
In one of the few empirical studies of posttreatment adjustment, 94 women with stage 0, I, II, or III breast cancer who were completing radiation therapy were assessed on measures of depression, anxiety, and quality of life on the last day of treatment and at 2 weeks, 4 to 6 weeks, 3 months, and 6 months posttreatment. Results found elevated symptoms of depression, low-level anxiety, and diminished quality of life on the last day of treatment; however, by 2 weeks later, symptoms of depression decreased significantly, and quality of life improved significantly. No other significant changes were found at any of the later posttreatment time periods, suggesting improvements in depression and quality of life occur quickly in most patients. 29
In regard to predictors of posttreatment distress, a longitudinal, observational study of 151 women with early-stage breast cancer found that physical symptoms and side effects experienced during treatment were predictive of posttreatment cancer-related distress, amounting to 6% of the total 24% of variance accounted for. 30
Normal adjustment to posttreatment and remission involves utilization of a variety of coping strategies; however, this phase often involves the frequent use of emotion-focused coping strategies (those designed to help regulate the normal emotional distress), given the variety of ambivalent emotional reactions. Those who adjust well are more likely to be comfortable expressing a wide range of both positive and negative emotions. Emotion-focused coping strategies include the following:
The transition from a curative treatment plan to one of palliative care is extremely difficult for cancer patients. 25 Extreme anguish often accompanies this transition as the patient faces renewed psychological distress, physical symptoms, and the existential crisis of death, all of which combine to result in the suffering often associated with advanced cancer. 31
The normal adjustment to this crisis is characterized by initial shock, disbelief, and denial followed by a period of significant distress (e.g., depressed mood, difficulty concentrating, frequent intrusive thoughts of death). Normal adjustment may include the following:
However, as with the initial diagnosis, this distress is often followed by a gradual adjustment over a period of weeks. It is important to note that these common reactions do not necessarily indicate psychopathology. Although the intensity of these emotions might be similar to more severe psychopathology, their frequency of occurrence and duration tend to be shorter. Patients experiencing normal adjustment to recurrence and palliative care will typically rally from these strong emotions more quickly than those experiencing a true mental disorder. (Refer to the PDQ® summaries on Depression and Post-traumatic Stress Disorder for more information.)
Adjustment to recurrence and palliative care often involves shifting expectations from cure to healing. From this perspective, healing involves a process of becoming whole again, 32 of transforming one's life in a variety of ways in the face of death. This process of adjustment involves maintaining hope, which is viewed as crucial in overall adaptation to crisis. 33
The patient who successfully adjusts to the crisis of recurrence often shifts expectations and maintains hope in a variety of meaningful life activities. For example, a patient who has confidence that pain and suffering can be controlled will have hope for future quality of life. Patients who believe they are loved and cared for will have hope in their future relationships. Religion and spirituality play a very important role in helping many patients maintain hope. Religion or spirituality can provide a belief structure that helps in coping with the crises of recurrence. During recurrence and palliative care, patients are likely to utilize meaning-based coping strategies and are likely to seek comfort in prayer and in their religious practices/rituals or spiritual beliefs. In addition, one study suggests that prognostic awareness in combination with inner peace is associated with better mental health and quality of death outcomes for patients with advanced cancer and for their surviving caregivers during bereavement. 34
In a study of women with recurrent breast cancer, significant impairments in physical, functional, and emotional well-being were found within 1 month after recurrence; however, a patient's self-efficacy (confidence in his or her ability to manage the demands of illness), social support, and family hardiness (family's internal strength and ability to manage hardship and change) had positive effects on quality of life. Conversely, more distress about physical symptoms, additional life concerns, a sense of hopelessness, and a negative perception of illness or caregiving were associated with a lower quality of life. 35
The adjustment from posttreatment to long-term survivorship is gradual and extends over many years. However, most patients, despite various cancer diagnoses and treatments, adjust well, 3 with some even reporting benefits to a cancer diagnosis (e.g., greater appreciation of life, reprioritizing of life values, strengthening of spiritual or religious beliefs). 36 37 38 39 Patients who have poorer adjustment tend to have greater medical problems, fewer social supports, poorer premorbid psychological adjustment, and fewer economic resources. 3
As cancer treatments have improved, cancer is becoming a chronic illness, particularly with certain cancer types (e.g., prostate, breast). Each of the various psychosocial areas of functioning with a chronic illness has its own unique adjustment issues. For example, long-term adjustment to being a survivor of cancer involves considerations of how one adjusts psychologically, socially, sexually, vocationally, and, of course, physically.
In general, studies of cancer survivors and healthy comparison groups have found no significant differences in measures of psychological distress, marital and sexual adjustment, social functioning, and overall psychosocial functioning. 3 However, there are some common areas of distress experienced by many cancer patients that are subthreshold or not severe enough to meet diagnostic criteria. These may include the following: 3 40
In one of the few prospective longitudinal studies of cancer survivors, 752 patients from three U.S. states were asked about a variety of psychosocial problems. About 1 year after diagnosis, 68% were concerned with their illness returning, approximately 60% were worried about recurrence, and 58% had fears of the future. In addition, approximately two out of three survivors were concerned about a physical health problem such as fatigue and loss of strength. Approximately 48% reported concerns with sleep difficulties, and 48% reported concerns with sexual dysfunction. Younger survivors (aged 1854 years), women, nonwhites, unmarried survivors, and those with lower incomes reported more problems. In comparisons of four common cancers, the most concerns regarding problems in living were reported by those with lung cancer, followed by survivors of breast, colorectal, and prostate cancers. 41
A large (N = 660) longitudinal study of women breast cancer survivors older than 65 years investigated factors associated with changes in emotional well-being. The overall findings suggest that the 5-year survivorship experience for most women is relatively stable, with few changes in emotional well-being. However, it was noted that women who had fewer than 12 years of formal education and women who perceived themselves as never being cured were more likely to experience declines in emotional well-being, while those who had better physical functioning, good emotional support, and the perception of positive physician-patient communication were less likely to have poor emotional health. 42
Distress has been defined as an unpleasant experience of an emotional, psychological, social, or spiritual nature that interferes with the ability to cope with cancer treatment. It extends along a continuum, from common normal feelings of vulnerability, sadness, and fears, to problems that are disabling, such as true depression, anxiety, panic, and feeling isolated or in a spiritual crisis. 1 Standards of care have been developed for the management of psychosocial distress. 2
The National Comprehensive Cancer Network (NCCN) 1 has the broad goal of establishing standards of care so that all patients experiencing psychosocial distress will be accurately and routinely identified, recognized, and treated. These guidelines include recommendations for the following:
(Refer to the Overview section of this summary for more information.)
Although many screening instruments have been tested with cancer patients (see Table 1), the NCCN Distress Thermometer (DT) has been the most widely investigated. The psychometric properties of the DT (a 010 visual analogue scale, in the form of a thermometer labeled with No Distress at 0, Moderate Distress at the midpoint, and Extreme Distress at 10) have been investigated. 3 The measure was found to have reasonable convergent and divergent validity when compared to two more well-established, multidimensional symptom inventories. This very brief rapid-screening procedure was found to have a moderate ability to accurately detect distress as defined by scores indicative of caseness on the two-symptom inventories. When specific cutoff scores were tested to maximize sensitivity and specificity, no single cutoff that maximized accuracy of classification was discovered. Thus, it was recommended that varying cutoff scores result in different referral recommendations, such that low scores result in no referral, moderate scores result in an optional referral, and high scores result in a strong recommendation for further interventions.
A few studies have investigated the prevalence of distress as measured by the DT. 3 4 5 6 7 8 Prevalence rates range from 22% to 58%. Different cutoff scores have been used, with most studies using a cutoff score of 4 or 5.
Pooled results from multiple studies suggest that approximately 40% of cancer patients report significant distress. 9 Patients with lung, pancreatic, and brain cancers seem more likely to report distress, but in general, type of cancer is only modestly associated with distress.
In regard to prevalence of distress along the clinical course, one study of 236 newly diagnosed breast cancer patients (awaiting their initial consultation with a surgical oncologist) found that 41% reported distress scores higher than 5 on the DT. In this same group of women, 11% reported symptoms suggestive of major depression, and 10% reported symptoms of posttraumatic stress. 10
In a study of 321 women with newly diagnosed stage I to stage III breast cancer, the ability of the single-item DT to specifically predict depression, as measured by a self-report questionnaire of the nine Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) symptoms for major depressive disorder, was investigated. Sensitivity and specificity characteristics were evaluated, and the optimal cutoff score of 7 was identified, resulting in a sensitivity of 0.81 and a specificity of 0.85 for detecting depression. Therefore, individuals scoring 7 or above should undergo a more thorough psychosocial evaluation. 11
Regarding predictors of distress, in a large sample (N = 380) of patients with mixed cancer diagnoses, those reporting a score of 4 or higher on the DT were more likely to be women, to have poorer functional performance (self-reported Karnofsky Performance Scale), and to have reported (on the Problem List that accompanies the DT) problems with housing, dealing with children, dealing with partner, depression, fears, nervousness, sadness, worry, and 14 of 20 physical ailments. 4
In regard to predictors of posttreatment distress, a longitudinal, observational study of 151 women with early-stage breast cancer found that physical symptoms and side effects experienced during treatment were predictive of posttreatment cancer-related distress, amounting to 6% of the total 24% of variance accounted for. 12 In addition, demographic variables associated with this posttreatment cancer-related distress included younger age, nonwhite racial status, and less formal education. Clinical variables associated with distress included having a mastectomy rather than lumpectomy, receiving hormonal treatment, and the presence of a diagnosable mental disorder at the time of recruitment into the study.
Screening and assessment have been viewed as two distinct processes. 13 14 Screening is a rapid method of identifying patients with psychosocial distress, typically done by using brief self-report questionnaires administered by nonmental-health professionals with the goal of determining who needs referral for more extensive assessment. 15 The psychosocial assessment of the cancer patient is a more in-depth clinical interview focused on factors relevant to coping and adaptation. Mental health professionals do the assessment interview with the goal of determining how well a patient is adjusting. 13
Most screening for psychosocial distress is focused on the individual patient; however, some family-focused screening procedures are being developed. 16
Administration of a screening instrument involves a brief 5- to 10-minute process in which each patient answers a series of simple, straightforward questions about distress, either orally or via a self-report questionnaire or computer. Answers are scored and evaluated on the basis of previously determined criteria. If scores are above the defined criteria, then a formal referral to the appropriate discipline (social work, psychology, psychiatry, palliative care, pastoral care) is made. Distress management then begins with a more comprehensive face-to-face psychosocial assessment interview 13 by a qualified health care professional (e.g., social worker, psychologist, psychiatrist, palliative care specialist, pastoral counselor).
Few empirical studies have evaluated the impact of structured screening programs. In two randomized, longitudinal, intervention studies, no significant differences in quality of life were found. 17 18 In one of these studies, however, a subgroup of moderately to severely depressed patients showed a significant reduction in depression following the intervention. Thus, further empirical evaluation of the effectiveness of screening programs is needed. The following examples will help to illustrate the process.
Memorial Sloan-Kettering Cancer Center has experimented with a distress thermometer modeled after those used to measure