ANXIETY AND DISTRESS

Anxiety often appears at various times during cancer screening, diagnosis, treatment, and recurrence. It can also affect the health behaviors of people at risk of cancer, contributing to actions that might prevent cancer. For example, when women with high levels of anxiety learn that they have a genetically higher risk of developing breast cancer than they had previously believed, they might perform breast self-examination less frequently.

For patients undergoing cancer treatment, anxiety may also heighten the expectancy of pain, other symptoms of distress, and sleep disturbances, and it can be a major factor in anticipatory nausea and vomiting. Regardless of severity, anxiety can substantially interfere with the quality of life of cancer patients and their families, and should be evaluated and treated.

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.

Definitions

To effectively match the needs of cancer patients with treatment interventions, health care professionals must be able to distinguish the periodic difficulties that characterize normal adjustment from more-serious mental disorders. To assist in this

evaluation, health care professionals need to understand the distinctions among a variety of related concepts.

Normal adjustment: Adjustment or psychosocial adaptation to cancer has been defined as an ongoing process in which the individual patient tries to manage emotional distress, solve specific cancer-related problems, and gain mastery of 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 many tasks associated with living with cancer. For more information, see the Normal Adjustment section.

Psychosocial distress: Distress in cancer has been defined as “a multifactorial unpleasant experience of a psychological (i.e., cognitive, behavioral, emotional), social, spiritual, and/or physical nature that may interfere with one's ability to cope effectively with cancer, its physical symptoms, and its treatment. Distress extends along a continuum, ranging from common normal feelings of vulnerability, sadness, and fears to problems that can become disabling, such as depression, anxiety, panic, social isolation, and existential and spiritual crisis.”For more information, see the Psychosocial Distress section.

Adjustment disorders: The adjustment disorders, a diagnostic category of the fifth edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5), are characterized by the presence of clinically significant emotional or behavioral symptoms that result in marked distress or significant impairment in social, occupational, or other important areas of functioning. The symptoms occur in response to an identifiable psychosocial stressor (e.g., cancer diagnosis), are less severe than in diagnosable mental disorders such as major depressive disorder or generalized anxiety disorder, and do not represent normal bereavement. For more information, see The Adjustment Disorders section.

Anxiety disorders: Anxiety disorders are a group of mental disorders whose common symptoms include excessive anxiety, worry, fear, apprehension, and/or dread. Although some anxiety can be adaptive, particularly in response to stressors such as cancer, anxiety disorders are excessive, unwarranted, often illogical fears, worry, and dread. Types of anxiety disorders in the DSM-5 include generalized anxiety disorder, panic disorder, agoraphobia, social anxiety disorder, specific phobia, obsessive-compulsive disorder, and post-traumatic stress disorder. For more information, see the Anxiety Disorders: Description and Etiology section.

Screening

Studies have tested the ability of single-item measures to accurately identify patients in distress.[4-8] In general, these ultrashort screening methods, such as the Distress Thermometer (DT), have demonstrated only modest overall accuracy. They are best for ruling out—but perform poorly at confirming—distress, anxiety, and depression.

The Distress Thermometer (DT)

The DT is a single-item, rapid-screening instrument from the National Comprehensive Cancer Network (NCCN). The DT asks patients to rate their distress on a scale of 0 to 10, with 10 being extreme distress. On an accompanying checklist, patients are asked to indicate what has been a problem for them in the past week.

Although many screening instruments have been tested with cancer patients, the DT has been the most widely investigated. The psychometric properties of the DT—a 0-to-10 visual analog scale in the form of a thermometer labeled No distress at 0 and Extreme distress at 10—have been investigated.

The DT was found to have reasonable convergent and divergent validity when compared with two well-established, multidimensional symptom inventories. The DT has a moderate ability to accurately detect distress, as defined by scores indicative of caseness on the two-symptom inventories.

In a systematic review and meta-analysis of 42 studies of distress in people with heterogenous cancer types, a DT cutoff score of 4 or higher was found to maximize the sensitivity and specificity of the measure for identifying distress.The authors found that a score of 4 or greater on the DT was correlated with clinically significant symptoms of anxiety and depression, as measured by the Hospital Anxiety and Depression Scale. A DT score of 4 or higher should prompt discussion with a member of the oncology team to determine the resource(s) or referral(s) that will best address the patient’s needs. Of note, a multinational validation of the DT among 288 adolescents and young adults with cancer identified a DT score of 5 or greater as the optimal cutoff score in this age group. However, additional research is needed to support these findings.

Other self-report screening instruments

Many other self-report questionnaires have been used as screening instruments (see Table 1). In general, they also are better for ruling out distress and perform poorly at confirming distress. Thus, most screening instruments will yield a high number of false-positive results and need to be followed by a more-extensive psychosocial assessment interview.

Psychosocial Assessment

When screening identifies distress, an assessment of psychosocial adaptation should follow. This assessment is typically a semistructured interview during which the professional evaluates how well an individual patient, a patient’s family, and other significant people in a patient’s life are adapting to the current demands of the illness. In general, this assessment process considers a wide variety of factors relevant to overall adaptation. For more information, see the General Factors Influencing Adjustment section.

A successful transition from screening to assessment involves clear communication between the oncology team and the patient. Although there is no single best way to talk to patients about psychosocial needs, clinical experience suggests some important concepts. First, most patients will respond to the recommendations of health care professionals who exhibit trust, expertise, warmth, care, and concern.

Choice of words is important. Words that suggest the stigma of serious mental illness, such as psychiatric, psychological, mental disorder, maladjustment, or mental illness, should be avoided in favor of words such as distress, concerns, worries, uncertainties, or stressors from the illness or its treatment. Suggestions for word choice include the following:

The questionnaire you filled out helps us to understand you as a whole person, and we want to provide the best care possible for you—physically, emotionally, socially, and spiritually.
As you may realize, a serious illness can affect your quality of life in many ways—emotionally, socially, financially, and in regard to work, relationships, and energy. There is much more to cancer than the physical aspects, and we want to be sure we are addressing these other dimensions of your life.
Your concerns and worries are understandable, given your illness and its treatment. We do not want to ignore the emotional, social, and spiritual aspects of your experience right now.
We have found that many patients benefit greatly from a chance to talk further about their concerns with a health care professional (e.g., social worker, mental health professional, palliative care specialist, or pastoral counselor), and we would like to schedule that appointment for you.

Long-term survivorship

The adjustment from posttreatment to long-term survivorship is gradual and extends over many years. However, despite various cancer diagnoses and treatments, most patients adjust well, with some even reporting benefits of a cancer diagnosis (e.g., greater appreciation of life, reprioritizing of life values, strengthening of spiritual or religious beliefs).[31-Patients who have poorer adjustment tend to have the following:

Greater medical problems.
Fewer social supports.
Poorer premorbid psychological adjustment.
Fewer economic resources.

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.

However, many cancer survivors experience some common areas of distress that are subthreshold or not severe enough to meet diagnostic criteria, including:

Anxiety about recurrence.
An increased sense of vulnerability.
Lowered sense of control.
Conditioned reminders of chemotherapy (smells, sights) that produce anxiety and nausea.
Post-traumatic stress–like symptoms (such as persistent, intrusive thoughts or recurrent imagery associated with cancer).
Fatigue.
Concerns about body image and sexuality.

An assessment of more than 6,000 cancer survivors found that more than 50% reported fear of recurrence, mostly with low intensity. Survivors at risk of high levels of fear of recurrence included women, individuals younger than 59 years, those at 5 to 7 years postdiagnosis, socially isolated individuals, those with lower education levels, and individuals with a history of metastases or recurrence.

In one of the few prospective longitudinal studies of cancer survivors, 752 survivors from three U.S. states were asked about a variety of psychosocial problems. About 1 year after diagnosis, 68% felt fearful that their illness would return, approximately 60% were concerned about relapse, and 58% had fears about 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 sleep difficulties, and 41% reported concerns with sexual dysfunction. Survivors who were younger (aged 18–54 years), female, non-White, unmarried, or who had 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.

Referral to psycho-oncology services may benefit patients during survivorship. A prospective observational study of 243 adults referred for psycho-oncology services assessed the impact of one or two visits for pharmacotherapy and/or psychotherapy on depression and distress. Patients were seen an average of 2.5 years after diagnosis. Depression was measured with the Patient Health Questionnaire (PHQ-9), and distress was measured with the Distress Thermometer. Participants' depression and distress scores were significantly lower at the second visit than at baseline. The differences in scores were clinically meaningful and did not differ by clinician type (prescriber or nonprescriber).

Multifocal interventions may help cancer survivors address multiple mental and physical health issues simultaneously. In a multicenter trial of 222 posttreatment breast cancer survivors, researchers implemented the Better Exercise Adherence after Treatment for Cancer (BEAT Cancer) intervention. In this study, over 3 months, patients engaged in 12 supervised exercise sessions that were tapered to an unsupervised at-home exercise program (though logged with a heart rate monitor), individual counseling sessions, and group counseling. These sessions encouraged regular exercise, promoted self-monitoring, and engaged patients in cognitive reframing of current physical limitations, which had a significant positive impact on body image, mood, cardiovascular fitness, and general quality of life.

Interventions

Treatment options should consider the patient's quality of life and not be based solely on the disorder. When anxiety is situational (i.e., produced by pain, another underlying medical condition, a hormone-secreting tumor, or a side effect of medication), prompt treatment of the cause usually leads to immediate control of anxiety symptoms.[1]

Initial management of anxiety includes providing adequate information and support to the patient. Initial symptoms, which may warrant a psychiatric or psychological consultation, may first be reported to the primary oncologist or surgeon.

Psychosocial interventions

Psychosocial approaches to the management of anxiety include the following:

Combinations of CBT techniques.
Insight-oriented psychotherapy.
Crisis intervention.
Couple and family therapy.
Group therapy.
Self-help groups.
Relaxation-based interventions.

Hypnosis, meditation, progressive relaxation, guided imagery, and biofeedback can be used to treat anxiety symptoms that are associated with the following:

Painful procedures.
Pain syndromes.
Crisis situations.
Anticipatory fears.
Depressive syndromes.

Combining different approaches can be beneficial for some patients. Referring patients who may be struggling with anxiety disorders for full assessment and psychological treatment will enhance participation in care, improve quality of life, and reduce the pain experience. For more information, see the Psychosocial Interventions for Distress section.

One study of 509 recurrence-free breast cancer survivors at 5 to 9 years posttreatment examined the usefulness of a comprehensive intervention that combined positive coping strategies based on CBT (e.g., calming self-talk or relaxation) with education about the disease, treatment, and potential side effects. Findings from this study indicated that women in the intervention group (n = 244) regularly used the intervention components to deal with triggers of fears of breast cancer recurrence and long-term treatment side effects. Most women in the intervention group found the strategies helpful.

Preliminary evidence suggests racial differences in the use and benefit of specific coping strategies (e.g., religious coping strategies, such as prayer and hopefulness, are used more by African American women and provide greater benefit for these women).

Pharmacological interventions

Patients with cancer often have symptoms of both anxiety and depression caused by stressors related to cancer treatment. Such symptoms of distress often are resolved with psychological support alone; however, in some cases, pharmacological interventions are required. For a list of symptoms of anxiety disorders possibly requiring pharmacological treatment.

Pharmacological treatment options for anxiety disorders are based on evidence from studies conducted in patients without cancer because of the lack of such studies in patients with cancer. However, some of these medications have been used for several decades to treat anxiety symptoms in patients with cancer. The treatment options and their use in the situations described below are also based on clinical experience with these agents in patients with cancer.

The use of medications to treat anxiety disorders is considered when patients experience more-severe symptoms or when their responses to psychosocial interventions are inadequate. When counseling resources are not available or the patient declines them, medication may be considered sooner rather than later. In certain cases, medications are started simultaneously with psychosocial interventions when it is likely that psychosocial support alone will be inadequate to provide relief or to provide it soon enough.

Pharmacological interventions can be used short term or long term, depending on individual patient and illness factors, including the following:

Severity of anxiety symptoms.
Level of functional/social impairment.
Psychiatric history.
Continued presence of cancer.
Cancer treatment–related factors contributing to anxiety directly or indirectly (e.g., high-intensity or long-term cancer treatments or treatment with agents known to cause to psychiatric symptoms [e.g., cytokines]).

Specific anxiety medications, such as the benzodiazepines listed in, are frequently used alone or in combination with psychological approaches to relieve anxiety symptoms. These medications are effective in the acute treatment of anxiety disorders because of their rapid onset of action. They are frequently used as monotherapy or as adjunctive agents in the short-term management (<4 months) of anxiety disorders. Their long-term use (>4 months) is limited by the potential for abuse and dependence and by their lack of antidepressant effects, as depression is often comorbid with anxiety disorders. Some indications and safety considerations for the use of benzodiazepines in patients with cancer include the following:

Short-acting benzodiazepines, such as alprazolam and lorazepam, can be effectively used to provide short-term relief at specific points in the cancer continuum of diagnosis, treatment, and recurrence. Examples of such short-term use include the treatment of anxiety during diagnostic procedures (e.g., certain radioimaging procedures) and about pending test results (e.g., for yearly mammograms in patients with a history of breast cancer).
Cancer treatments, such as intensive chemotherapeutic regimens, can cause significant physical and emotional distress and exacerbate anxiety. Short-acting or intermediate-acting agents (e.g., clonazepam) can provide significant relief of anxiety and other symptoms, such as insomnia secondary to anxiety, during active cancer treatments.
Longer-acting medications (e.g., diazepam and clorazepate) should generally be avoided because of their long half-lives. These medications can cause or exacerbate cognitive impairment, disorientation, and drowsiness because of their potential for accumulation.
Patients with medical conditions such as delirium can present with anxiety and agitation. Benzodiazepine use in patients with such conditions is contraindicated because these agents can cause or exacerbate confusion and disorientation.
All patients, especially older adult patients, receiving benzodiazepines should be closely monitored for cognitive impairment, daytime sedation, and fall risks. Use of these agents should be optimized in patients who are older, have multiple comorbidities or liver disease, or are taking multiple medications.
Use of these agents should be closely monitored and optimized in patients receiving other sedating medications, central nervous system depressants, or agents with potential for causing respiratory depression (e.g., opiates).
It is important to continuously monitor and reevaluate anxiety symptoms in all patients receiving benzodiazepines. Use of these medications can be tapered off if anxiety symptoms resolve after cancer treatment ends.
In some patients, the use of benzodiazepines is continued (as monotherapy or adjunctive treatment) over a longer period (>4 months) because of persistent and debilitating anxiety symptoms. It is important to monitor the development of tolerance, abuse, and dependence issues as well as comorbid depressive symptoms in such patients. Long-term and sometimes chronic use of these agents might be indicated in a subpopulation of patients, with close monitoring and frequent risk-benefit assessments. Persistent (after 3 or 4 months) anxiety symptoms frequently lead to depression. Patients with persistent anxiety symptoms with or without depression might benefit from alternative treatments (e.g., paroxetine, sertraline).