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Information from PDQ -- for Health Professionals
Normal adjustment, psychosocial distress, and the adjustment disorders
208/11333
** OVERVIEW **
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, most patients experience a variety of difficult
emotional responses. In order 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 (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
-------------------------------------------------------------------------------
===============================================================================
References:
1. Derogatis LR, Morrow GR, Fetting J, et al.: The prevalence of psychiatric
disorders among cancer patients. JAMA: Journal of the American Medical
Association 249(6): 751-757, 1983.
2. Massie MJ, Holland JC: Overview of normal reactions and prevalence of
psychiatric disorders. In: Holland JC, Rowland JH, eds.: Handbook of
Psychooncology: Psychological care of the patient with cancer. New York,
NY: Oxford University Press, 1989, pp 273-282.
3. American Psychiatric Association: Diagnostic and Statistical Manual of
Mental Disorders: DSM-IV-TR. 4th ed., text rev., Washington, DC:
American Psychiatric Association, 2000.
4. NCCN practice guidelines for the management of psychosocial distress.
National Comprehensive Cancer Network. Oncology (Huntington NY) 13(5A):
113-147, 1999.
** NORMAL ADJUSTMENT **
Adjustment or psychosocial adaptation to cancer has been defined [1-5] 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 crises
of 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 diagnosis, treatment (surgery, radiation,
chemotherapy), post-treatment and remission, recurrence and palliative care,[6]
and survivorship.[3] 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).
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]
-- Coping Theory --
One cognitive theory of coping [9] proposes that in response to significant
life events, a person asks two important questions: "Is this event personally
significant to me?" and "What resources do I have to manage/control this
event?" 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.[10] To lower distress, therefore,
either the perceived demands of the situation should be lowered, or the
perceived resources should be increased.
-- General Factors Influencing Adjustment --
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. Psychosocial
adjustment/adaptation has been determined to be influenced by 3 broad
categories of factors: cancer-derived, patient-derived, and
society-derived.[4,11] Cancer-derived factors include the type of cancer, its
stage, and its prognosis, as well as where a patient falls in the cancer
continuum of diagnosis, treatment, and recurrence. Patient-derived factors
include two types of resources: intrapersonal coping resources and
interpersonal social support, as well as consideration for stage of life (i.e.,
developmental tasks--young 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.
-- Specific Influences on Adjustment --
Hearing the Diagnosis
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]
References:
1. Brennan J: Adjustment to cancer - coping or personal transition?
Psycho-oncology 10(1): 1-18, 2001.
2. Folkman S, Greer S: Promoting psychological well-being in the face of
serious illness: when theory, research and practice inform each other.
Psycho-oncology 9(1): 11-19, 2000.
3. Kornblith AB: Psychosocial adaptation of cancer survivors. In: Holland
JC, Breitbart W, Jacobsen PB, et al., eds.: Psycho-oncology. New York,
NY: Oxford University Press, 1998, pp 223-241.
4. Nicholas DR, Veach TA: The psychosocial assessment of the adult cancer
patient. Professional Psychology: Research and Practice 31(2): 206-215,
2000.
5. Spencer SM, Carver CS, Price AA: Psychological and social factors in
adaptation. In: Holland JC, Breitbart W, Jacobsen PB, et al., eds.:
Psycho-oncology. New York, NY: Oxford University Press, 1998, pp
211-222.
6. Loscalzo M, Brintzenhofeszoc K: Brief crisis counseling. In: Holland
JC, Breitbart W, Jacobsen PB, et al., eds.: Psycho-oncology. New York,
NY: Oxford University Press, 1998, pp 662-675.
7. Pearlin LI, Schooler C: The structure of coping. Journal of Health and
Social Behavior 19(1): 2-21, 1978.
8. Rowland JH: Intrapersonal resources: coping. In: Holland JC, Rowland
JH, eds.: Handbook of Psychooncology: Psychological Care of the Patient
With Cancer. New York, NY: Oxford University Press, 1989, pp 44-57.
9. Lazarus RS, Folkman S: Stress, Appraisal, and Coping. New York, NY:
Springer Publishing Co, 1984.
10. American Psychiatric Association: Diagnostic and Statistical Manual of
Mental Disorders: DSM-IV-TR. 4th ed., text rev., Washington, DC:
American Psychiatric Association, 2000.
11. Holland JC: Clinical course of cancer. In: Holland JC, Rowland JH,
eds.: Handbook of Psychooncology: Psychological Care of the Patient With
Cancer. New York, NY: Oxford University Press, 1989, pp 75-100.
12. Weisman AD, Worden JW: The existential plight in cancer: significance of
the first 100 days. International Journal of Psychiatry in Medicine
7(1): 1-15, 1976.
13. Holland JC, Gooen-Piels J: Principles of psycho-oncology. In: Holland
JC, Frei E, eds.: Cancer Medicine e.5. 5th ed. Hamilton, Ontario: B.C.
Decker Inc, 2000., pp 943-958.
14. Sherman AC, Simonton S: Family therapy for cancer patients: clinical
issues and interventions. The Family Journal: Counseling and Therapy
for Couples and Families 7(1): 39-50, 1999.
15. Harpham WS: After Cancer: A Guide to Your New Life. New York, NY: WW
Norton & Company, 1994.
16. Cherny NI, Coyle N, Foley KM: Suffering in the advanced cancer patient: a
definition and taxonomy. Journal of Palliative Care 10(2): 57-70, 1994.
17. Dienstfrey H: Training for cancer: an interview with Michael Lerner.
Advances: The Journal of Mind-Body Health 10(2): 27-37, 1994.
18. Beck AT, Weissman A, Lester D, et al.: The measurement of pessimism: the
hopelessness scale. Journal of Consulting and Clinical Psychology
42(6): 861-865, 1974.
19. Polinsky ML: Functional status of long-term breast cancer survivors:
demonstrating chronicity. Health and Social Work 19(3): 165-173, 1994.
20. Curbow B, Somerfield MR, Baker F, et al.: Personal changes, dispositional
optimism, and psychological adjustment to bone marrow transplantation.
Journal of Behavioral Medicine 16(5): 423-443, 1993.
21. Belec RH: Quality of life: perceptions of long-term survivors of bone
marrow transplantation. Oncology Nursing Forum 19(1): 31-37, 1992.
22. Smith MY, Redd WH, Peyser C, et al.: Post-traumatic stress disorder in
cancer: a review. Psycho-oncology 8(6): 521-537, 1999.
** PSYCHOSOCIAL DISTRESS **
It has been noted [1,2] that nearly every patient having to deal with a wide
variety of stressors at varying stages of disease and treatment experiences
some level of distress; however, only a small percentage of those in distress
are currently receiving appropriate help. Recent standards of care have been
developed for the management of psychosocial distress.[1]
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.)
-- Screening --
Screening and assessment have been viewed as two distinct processes.[3,4]
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.[5] 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.[3]
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.
-- Psychosocial Assessment --
The relationship between a patient and the primary oncology team is important.
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. The member of the primary
oncology team who has the closest professional relationship with the patient
may be the best one to discuss 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:
- The questionnaire you filled out helps us 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 the quality of your life
in many ways (emotionally, socially, work, relationships, finances,
energy). There is much more to this illness than just the physical, and
we want to be sure we are addressing these other dimensions of your life.
- Your concerns and worries are very understandable, given your illness and
its treatment. We don't want to ignore the (emotional, social, 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 (social worker, mental health
professional, palliative care specialist, or pastoral counselor), and we
would like to schedule that for you.
- For further explanation, we suggest an interview that lasts about 45
minutes with a professional who will:
- Listen closely to you.
- Want to know about your experiences with your illness.
- Ask about you, your family and friends, and other support persons.
- Ask about how you have been adjusting to your illness and may
encourage you to continue (and give you feedback about) successful
coping strategies you are already using.
- Have suggestions about additional ways to address your concerns.
An assessment of psychosocial adaptation will follow screening and referral to
an appropriate health care professional. The psychosocial assessment is
typically a semistructured interview during which the professional is
evaluating 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 will consider a wide variety
of factors relevant to overall adaptation. (See the General Factors
Influencing Adjustment section of this summary.) The experienced interviewer
assessing psychosocial adaptation will consider these and other relevant
variables, while also establishing a working relationship with each patient
through which to begin a process of ongoing counseling and/or psychotherapy
when needed.
References:
1. NCCN practice guidelines for the management of psychosocial distress.
National Comprehensive Cancer Network. Oncology (Huntington NY) 13(5A):
113-147, 1999.
2. Weisman AD, Worden JW: The existential plight in cancer: significance of
the first 100 days. International Journal of Psychiatry in Medicine
7(1): 1-15, 1976.
3. Nicholas DR, Veach TA: The psychosocial assessment of the adult cancer
patient. Professional Psychology: Research and Practice 31(2): 206-215,
2000.
4. Zabora JR: Screening procedures for psychosocial distress. In: Holland
JC, Breitbart W, Jacobsen PB, et al., eds.: Psycho-oncology. New York,
NY: Oxford University Press, 1998, pp 653-661.
5. Zabora JR, Smith-Wilson R, Fetting JH, et al.: An efficient method for
psychosocial screening of cancer patients. Psychosomatics 31(2):
192-196, 1990.
6. Derogatis LR, Melisaratos N: The brief symptom inventory: an introductory
report. Psychological Medicine 13: 595-605, 1983.
7. Zung WW: Depression in the normal aged. Psychosomatics 8(5): 287-292,
1967.
8. Zung WW: Factors influencing the self-rating depression scale. Archives
of General Psychiatry 16(5): 543-547, 1967.
9. Kirsh KL, Passik S, Holtsclaw E, et al.: I get tired for no reason: a
single item screening for cancer-related fatigue. Journal of Pain and
Symptom Management 22(5): 931-937, 2001.
10. Zigmond AS, Snaith RP: The hospital anxiety and depression scale. ACTA
Psychiatrica Scandinavica 67(6): 361-370, 1983.
11. Cella DF, Tulsky DS, Gray G, et al.: The Functional Assessment of Cancer
Therapy scale: development and validation of the general measure.
Journal of Clinical Oncology 11(3): 570-579, 1993.
12. McNair DM, Lorr M, Droppleman LF: Profile of Mood States Manual. San
Diego, Calif: Educational and Industrial Testing Service, 1992.
13. Dugan W, McDonald MV, Passik SD, et al.: Use of the Zung Self-Rating
Depression Scale in cancer patients: feasibility as a screening tool.
Psycho-oncology 7(6): 483-493, 1998.
14. Roth AJ, Kornblith AB, Batel-Copel L, et al.: Rapid screening for
psychologic distress in men with prostate carcinoma: a pilot study.
Cancer 82(10): 1904-1908, 1998.
15. Carroll BT, Kathol RG, Noyes R Jr, et al.: Screening for depression and
anxiety in cancer patients using the Hospital Anxiety and Depression
Scale. General Hospital Psychiatry 15(2): 69-74, 1993.
16. Hopwood P, Howell A, Maguire P: Screening for psychiatric morbidity in
patients with advanced breast cancer: validation of two self-report
questionnaires. British Journal of Cancer 64(2): 353-356, 1991.
17. Ibbotson T, Maguire P, Selby P, et al.: Screening for anxiety and
depression in cancer patients: the effects of disease and treatment.
European Journal of Cancer 30A(1): 37-40, 1994.
18. Razavi D, Delvaux N, Farvacques C, et al.: Screening for adjustment
disorders and major depressive disorders in cancer in-patients. British
Journal of Psychiatry 156: 79-83, 1990.
** THE ADJUSTMENT DISORDERS **
The adjustment disorders, a diagnostic category of the American Psychiatric
Association's Diagnostic and Statistical Manual of Mental Disorders
(DSM-IV),[1] are defined as reactions to an identifiable psychosocial stressor
(e.g., cancer diagnosis) with a degree of psychopathology that is less severe
than diagnosable mental disorders such as major depressive disorder or
generalized anxiety disorder and yet are "in excess of what would be expected"
or result in "significant impairment in social or occupational functioning."
===============================================================================
-------------------------------------------------------------------------------
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]
-------------------------------------------------------------------------------
===============================================================================
-- Prevalence --
In the general population, adjustment disorders are thought to be common,
although prevalence rates vary by population studied. In studies of community
samples of children, adolescents, and the elderly, prevalence estimates have
ranged from 2% to 8%. In outpatient mental health settings, prevalence rates
have been as high as 10% to 30%; while in general hospital inpatients,
prevalence rates have been as high as 12% of those referred for a mental health
consultation.[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.
-- Course --
As defined in the diagnostic criteria, an adjustment disorder begins within 3
months of the onset of an identifiable stressor and lasts no longer than 6
months after the stressor or its consequences have ceased. Two specifiers
exist to discriminate between an acute adjustment disorder (fewer than 6
months) and a chronic adjustment disorder (more than 6 months). The cancer
patient may experience a sequence of multiple, sequential stressors such as the
diagnosis, the start of treatment, side effects to treatment, conclusion of
treatment, and return to work. It is often difficult to determine when a
stressor has ceased. It is not unusual to see a chronic adjustment disorder
that persists because of the presence of multiple, sequential stressors. The
persistent adjustment disorder may also progress to become a more serious
mental disorder (e.g., major depressive disorder). Chronic adjustment
disorders that persist and progress to more severe mental disorders appear more
common in children and adolescents than in adults.[1]
-- Problems in Diagnosing Adjustment Disorders --
The adjustment disorders are an intermediate category between normal adjustment
and a specific diagnosable mental disorder. In terms of their location within
a hierarchy of increasingly severe mental disorders, the adjustment disorders
are an intermediate category as follows:
- Major mental disorders (e.g., major depressive disorder, panic disorder,
post-traumatic stress disorder, generalized anxiety disorder)
- Disorders not otherwise specified (NOS)
- Adjustment disorders
- Problem-level diagnoses (e.g., partner relational problems, bereavement,
physical abuse of child)
- Fluctuations in mood that represent "normal" adaptation.[3]
This intermediate status and the lack of any specific list of symptoms raise a
number of problems with the adjustment disorder's diagnostic category.[3] Most
of the problems stem from lack of specificity and resulting subjectivity. This
lack of specificity applies to both the identifiable stressor and the marked
distress/significant impairment.
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.
-- Treatment --
No randomized clinical trials for the treatment of adjustment disorders have
been identified.[3] Thus, treatment recommendations are based on related
intervention studies, meta-analyses, and consensus from clinical experience.
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.)
References:
1. American Psychiatric Association: Diagnostic and Statistical Manual of
Mental Disorders: DSM-IV-TR. 4th ed., text rev., Washington, DC:
American Psychiatric Association, 2000.
2. Derogatis LR, Morrow GR, Fetting J, et al.: The prevalence of psychiatric
disorders among cancer patients. JAMA: Journal of the American Medical
Association 249(6): 751-757, 1983.
3. Strain JJ: Adjustment disorders. In: Holland JC, Breitbart W, Jacobsen
PB, et al., eds.: Psycho-oncology. New York, NY: Oxford University
Press, 1998, pp 509-517.
4. Meyer TJ, Mark MM: Effects of psychosocial interventions with adult
cancer patients: a meta-analysis of randomized experiments. Health
Psychology 14(2): 101-108, 1995.
5. Greer S, Moorey S, Baruch JD, et al.: Adjuvant psychological therapy for
patients with cancer: a prospective randomised trial. British Medical
Journal 304(6828): 675-680, 1992.
6. Telch CF, Telch MJ: Group coping skills instruction and supportive group
therapy for cancer patients: a comparison of strategies. Journal of
Consulting and Clinical Psychology 54(6): 802-808, 1986.
7. Jacobsen PB, Hann DM: Cognitive-behavioral interventions. In: Holland
JC, Breitbart W, Jacobsen PB, et al., eds.: Psycho-oncology. New York,
NY: Oxford University Press, 1998, pp 717-729.
8. Fawzy FI, Cousins N, Fawzy NW, et al.: A structured psychiatric
intervention for cancer patients. I. Changes over time in methods of
coping and affective disturbance. Archives of General Psychiatry 47(8):
720-725, 1990.
Date Last Modified: 07/2002
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