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Psychosocial distress exists on a continuum (Figure 1) ranging from normal adjustment issues through the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) Adjustment Disorders;[3] 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,[4] and the adjustment disorders. (Refer to the PDQ summaries on Anxiety and Depression for more information.)
------------------------------------------------------------------------------- Figure 1. The Distress Continuum |---------|--------------|------------------|---------------------|----------| Normal Adjustment Subthreshold Diagnosable Mental Adjustment Disorders to Mental Disorders Disorders -------------------------------------------------------------------------------
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).
Coping strategies refer to those less frequently used and more situation-specific coping efforts, such as readjusting one's daily routine or work schedule in order 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:[2,7,8] problem-focused, emotion-focused, and meaning-focused. 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]
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.[10] To lower distress, therefore, either the perceived demands of the situation should be lowered, or the perceived resources should be increased.
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).[12] 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 [13] has described the normal responses to the crisis of cancer as consisting of three phases: initial response, dysphoria, and adaptation.
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 1-2 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.
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.[8] 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. It is important to note that 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]
Active Cancer Treatments
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 painful procedures, unwanted side effects (hair loss, nausea/vomiting, fatigue, pain), and disruptions to daily life. Disruptions that include changes in life roles are difficult for many patients (e.g., the breadwinner who can no longer work). 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."[13] Questions that often occur during active treatment include, "Will I survive this?" or "Will they get it all?" or "What side effects will I experience?" 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 coping--strategies designed to manage specific problem situations (e.g., fatigue, transportation to treatments, altered work schedules, role changes)--are often utilized.
Post-Treatment and Remission
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.[14] 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 fear 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 [15]). Many patients find waiting for test results to be a particularly distressing experience.
Normal adjustment to post-treatment 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 an honesty with one's emotions, an awareness of one's feelings, a nonjudgmental acceptance of one's feelings, an ability to articulate these feelings to others, a willingness to approach the task of working through these emotions, and availability of support from others willing to listen and accept.
Recurrence and Palliative Care
The transition from a curative treatment plan to one of palliative care is extremely difficult for cancer patients.[13] 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.[16]
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 periods of significant sadness and crying, periodic feelings of anger at God or one's perceived higher power, periods of withdrawal and isolation, and even thoughts of giving up. 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, Anxiety Disorder, 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,"[17] 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.[18] 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.
Survivorship
The adjustment from post-treatment and remission 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).[19-21] 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 anxiety about recurrence, 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, recurrent imagery associated with cancer treatments, feelings of estrangement from others [22]), and concerns about body image and sexuality.[3]
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 screening, triage, and initial evaluation, as well as referral and treatment guidelines for each participating profession: mental health (psychology and psychiatry), social work, palliative care, and pastoral care. Times most likely to require screening include those periods in the course of the illness when distress is most likely, such as shortly following diagnosis, start of treatment (surgery, radiation, chemotherapy), conclusion of a long course of treatment, periodically during post-treatment and remission, at time of recurrence, and with the transition to palliative care.
Because there continues to be a stigma attached to terms such as psychological, psychiatric, or even emotional, the term distress was chosen by the NCCN to represent an accurate yet less stigmatizing concept. It 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] (See the Overview section of this summary.)
Various comprehensive cancer centers have developed models for screening for psychosocial distress. Although there are notable differences, most models involve the following sequential steps: screening administration, scoring and evaluation, and referral.
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 [3] by a qualified health care professional (e.g., social worker, psychologist, psychiatrist, palliative care specialist, pastoral counselor). The following examples will help to illustrate the process.
Memorial Sloan-Kettering Cancer Center (MSKCC)
MSKCC has experimented with a distress thermometer modeled after those used to measure pain.[1] The descriptive anchor points on the thermometer include "no distress" at a rating of 0; "moderate distress" at a rating of 5; and "extreme distress" at a rating of 10. Patients are asked, "How would you rate your distress today, on a scale of 0 to 10?" Accompanying the thermometer is a problem list that helps to identify which potential sources of stress are relevant. The patient is simply asked to check those problems of most relevance. Categories of problems include practical (e.g., housing, insurance, transportation), physical (e.g., pain, nausea, fatigue), family or support (e.g., partner, children, friends), emotional (e.g., worry, sadness, depression, anger), and spiritual/religious (e.g., relating to God, loss of faith). The primary oncology team (oncologist, nurse, palliative care specialist, social worker) is responsible for administering and evaluating a patient's response to this brief screening and arranging for referral, when necessary. Preliminary testing of this procedure used a cutoff score of 5 or higher as requiring further evaluation. Initial needs assessments have shown that 20% to 35% of patients report significant levels of distress.
Johns Hopkins Cancer Center
At Johns Hopkins all new patients are given an 18-item version of the Brief Symptom Inventory,[6] which lists 18 problems people sometimes experience (e.g., faintness or dizziness, no interest in things, loneliness, nausea or upset stomach). They are asked "How much were you distressed by" each of the 18 problems "during the past 7 days including today." The procedure is automated and utilizes existing clerical and support staff to distribute and retrieve the inventory during the first or second visit.[4] After computerized scoring is completed, professional staff is involved when offers for services are being provided. Those screened as having high distress are referred to a social worker for immediate follow-up, while those screened as having low distress are referred to the psychosocial orientation program. This is a structured, educational program designed to enhance the adaptation of patients by providing information about a range of psychosocial programs (e.g., disease-specific support groups, psycho-educational presentations).
Community Cancer Care
The Oncology Symptom Control Research group at Community Cancer Care typically screens all incoming patients with the Zung Self-Rating Depression Scale (ZSDS).[7,8] The ZSDS is a 20-item self-report depression screen that has been used to detect depression and more general distress; single items are also used to screen for conditions such as fatigue.[9] Staff typically administer the screen while patients are in the waiting room. Scores are analyzed immediately after completion so that the medical oncologists can be briefed on any pertinent issues. In addition, patients scoring in the moderate range or higher are identified for further follow-up and more extensive interviews and assessment by either the staff psychiatrist or psychologist. Also, patients who trigger single items of interest, such as fatigue, are interviewed and followed for possible inclusion in a number of symptom-control research trials.
Self-Report Screening Instruments
A variety of other self-report screening instruments have been used for psychosocial screening, within the context of a variety of procedures similar to the examples above, and designed to identify all patients experiencing distress. Some of these instruments are listed in Table 1.
-------------------------------------------------------------------------------
Table 1. Self-Report Screening Instruments Used for Identification of
Psychosocial Distress in Cancer Patients
-------------------------------------------------------------------------------
Title # Items Time Constructs Measured
-------------------------------------------------------------------------------
Distress Thermometer varies 2-3 minutes distress & problems
& Problem List [4] related to the distress
-------------------------------------------------------------------------------
Brief Symptom Inventory 18 3-5 minutes somatization, depression,
(BSI) [6] anxiety, general distress
-------------------------------------------------------------------------------
Brief Symptom Inventory 53 7-10 minutes somatization, anxiety,
(BSI) [6] obsessive-compulsiveness,
interpersonal sensitivity,
depression, hostility,
phobic anxiety, paranoid
ideation, psychoticism
-------------------------------------------------------------------------------
Hospital Anxiety & 14 5-10 minutes symptoms of clinical
Depression Scale depression and anxiety
(HADS) [10]
-------------------------------------------------------------------------------
Functional Assessment of 27 5-10 minutes 4 domains of quality of
Chronic Illness Therapy life: physical,
(FACIT; formerly the functional, social/family,
FACT) [11] emotional well-being
-------------------------------------------------------------------------------
Profile of Mood States 65 3-5 minutes 6 mood states: anxiety,
(POMS) [12] depression, anger, vigor,
fatigue, confusion
-------------------------------------------------------------------------------
Zung Self-Rating 20 5-10 minutes symptoms of depression
Depression Scale [13]
-------------------------------------------------------------------------------
Self-report screening instruments must be scored, evaluated, and discussed with each patient. Triage--the process of communicating screening results, discussing each patient's needs, and determining the best course of further action--is key to the successful use of screening. In fact, screening without availability of appropriate treatment resources is considered unethical. The NCCN standards of care [1] suggest distress rated as mild might result in a referral to a local self-help group, or management by the primary oncology team only. Distress rated as moderate to severe warrants referral to other appropriate professionals (psychologists, psychiatrists, social workers, palliative care specialists, pastoral counselors), depending on the nature of the distress.
The primary oncology team (oncologist, nurse, palliative care specialist, social worker, counselor) is responsible for successful triage. In some studies a significant percentage of patients who report moderate to high levels of distress refuse further assessment.[14-18] Thus, it is important to consider how the primary oncology team can introduce the need for further psychosocial assessment.
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. When screening and referral are done routinely, patients can be accurately informed that this is a normal, routine procedure done for all patients. Suggestions for word choice include the following:
-------------------------------------------------------------------------------
Table 2. Diagnostic Criteria for the Adjustment Disorders *
-------------------------------------------------------------------------------
Criterion A. The development of emotional or behavioral symptoms in response
to an identifiable stressor(s) occurring within 3 months of the
onset of the stressor(s).
Criterion B. These symptoms or behaviors are clinically significant as
evidenced by either of the following:
1. Marked distress that is in excess of what would be expected
from exposure to the stressor.
2. Significant impairment in social or occupational (academic)
functioning.
Criterion C. The stress-related disturbance does not meet the criteria for
another specific Axis I disorder and is not merely an
exacerbation of a preexisting Axis I or Axis II disorder.
Criterion D. The symptoms do not represent Bereavement.
Criterion E. Once the stressor (or its consequences) has terminated, the
symptoms do not persist for more than an additional 6 months.
Specify:
Acute: if the disturbance lasts less than 6 months
Chronic: if the disturbance lasts for 6 months or longer.
Specific subtypes represent the predominant symptoms and include:
with depressed mood
with anxiety
with mixed anxiety and depressed mood
with disturbance of conduct
with mixed disturbance of emotions and conduct
unspecified
-------------------------------------------------------------------------------
* Adapted from American Psychiatric Association, 2000.[1]
-------------------------------------------------------------------------------
Nearly every cancer patient experiences what could be considered an identifiable stressor, whether that is diagnosis, treatment, recurrence, or side effects. The presence of an adjustment disorder is determined more by the patient's response to the identifiable stressor, and whether that response is considered in excess of what would be expected or results in significant impairment, typically in social or occupational functioning.
One study [2] evaluated 215 randomly selected hospitalized and ambulatory cancer patients in three different cancer centers and found that of this group, slightly fewer than half (47% or 101 patients) met the diagnostic criteria for any mental disorder (DSM-III criteria). From this group of 101, 68% (69 patients) met the diagnostic criteria for an adjustment disorder. Of the entire 215 patients evaluated, approximately 32% were identified as meeting the diagnostic criteria for an adjustment disorder--the highest prevalence of any diagnostic category. It seems safe to conclude that the adjustment disorders are the most commonly diagnosed mental disorder in the oncology setting.
No criteria or guidelines exist in DSM-IV to quantify the nature of the psychosocial stressor(s). Given individual differences in coping abilities, certain stressors are likely to be very stressful for one patient and not stressful at all for another patient. With no quantifiable guidelines for measuring stressors, a diagnosis is often determined by the nature of an individual's response. If a person responds with marked distress or significant impairment in functioning, it is often assumed that the life event was an identifiable stressor. However, the identification of a response that evidences marked distress or significant impairment also lacks specificity and is thus very subjective. Many of these diagnostic terms are too vague to be valid or reliable; thus, there is considerable variation in the use of the adjustment disorder category.
Despite these problems, the adjustment disorder category does provide a means of identifying an emotional or behavioral response in need of further treatment. Cancer patients are regularly confronted with a variety of stressors and thus face the potential of experiencing an adjustment disorder.
Individual and Group Counseling and Psychotherapy
Although no studies have been targeted specifically at a population of cancer patients diagnosed exclusively with adjustment disorder, a number of studies have shown the benefits of psychosocial interventions with adult cancer patients (e.g., meta-analysis).[4] These interventions have included both individual [5] and group counseling [6] and have utilized a variety of theoretical approaches.
Cognitive-behavioral interventions have been widely studied. A cognitive-behavioral approach is based on the idea that mental, emotional, and even physical symptoms partly stem from one's thoughts, feelings, and behaviors, resulting in poor adaptation.[7] Interventions focus directly on a patient's thoughts, feelings, and behaviors with the goal of altering specific coping strategies and alleviating emotional distress. Cognitive-behavioral interventions include a variety of techniques such as relaxation training, biofeedback, contingency management, problem-solving, and cognitive restructuring, as well as distraction, thought stopping, coping self-statements, and mental imagery exercises. Most studies have combined a variety of these approaches into a multicomponent treatment strategy designed to alleviate specific symptoms. Cognitive-behavioral approaches tend to be relatively short-term, brief interventions well-suited to the oncology setting.[7]
A meta-analysis of 45 such studies investigating 62 treatment-control comparisons found significant beneficial effects in emotional adjustment.[4] Beneficial effect sizes for emotional adjustment ranged from .19 to .28, indicating that the average cancer patient receiving treatment was better off than 56.5% to 59.5% of those patients not receiving treatment. These interventions have been administered in both individual [5] and group formats,[8] indicating benefits in emotional adjustment from both formats at the conclusion of the intervention and at 6-month and 12-month follow-up assessments.
Pharmacotherapy
No studies have specifically targeted a population of cancer patients diagnosed exclusively with adjustment disorder, where the primary intervention was some form of pharmacotherapy. Given the nature of the adjustment disorders, clinical experience suggests that an initial trial of short-term counseling or psychotherapy designed to alter or eliminate the identified stressor (and thus alleviate symptoms) should be tried before pharmacotherapy.[3] As mentioned previously, sometimes the adjustment disorder may progress to a more severe mental disorder (e.g., major depressive disorder) and thus warrant consideration of pharmacotherapy. In addition, when the patient does not benefit from short-term psychotherapy, adding an appropriate psychotropic medication for a brief period of time (e.g., 2-3 weeks for antianxiety medications, 12 months for antidepressants) may facilitate the psychotherapy, allowing the patient to better employ available coping strategies. The specific pattern of emotional or behavioral symptoms will determine which type of psychotropic medication to consider. (Refer to the PDQ summaries on Depression and Anxiety Disorders for more information.)
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