Summary Type: Supportive care
Summary Audience: Health professionals
Summary Language: English
Summary Description: Expert-reviewed information summary about the difficult emotional responses many cancer patients experience. This summary focuses on normal adjustment issues, psychosocial distress, and adjustment disorders.
Studies examining the prevalence of mental disorders in cancer 1,2 show that most cancer patients do not meet the diagnostic criteria for any specific mental disorder; however, many patients do experience a variety of difficult emotional responses.3 To effectively match patient needs and treatment interventions, health care professionals must be able to distinguish the periodic difficulties that characterize normal adjustment from more serious mental disorders.
Psychosocial distress exists on a continuum (see figure below) ranging from normal adjustment issues through the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) Adjustment Disorders;4 to a level close to, but below, the threshold (i.e., meets some diagnostic criteria but not all) of diagnosable mental disorders; to syndromes that meet the full diagnostic criteria for a mental disorder (e.g., major depressive disorder). This summary focuses primarily on the less severe end of this continuum: the normal adjustment issues, psychosocial distress,5 and the adjustment disorders. (Refer to the PDQ summaries on
Anxiety Disorder, Depression, and Post-Traumatic Stress Disorderfor more information.)
---------------------------------------------------------------------------------- The Distress Continuum |---------|--------------|------------------|---------------------|----------| Normal Adjustment Subthreshold Diagnosable Mental Adjustment Disorders to Mental Disorders Disorders (e.g., major depressive disorder) -------------------------------------------------------------------------------------
1 Derogatis LR, Morrow GR, Fetting J, et al.: The prevalence of psychiatric disorders among cancer patients. JAMA 249 (6): 751-7, 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 273-82.
3 Bisson JI, Chubb HL, Bennett S, et al.: The prevalence and predictors of psychological distress in patients with early localized prostate cancer. BJU Int 90 (1): 56-61, 2002.
4 American Psychiatric Association.: Diagnostic and Statistical Manual of Mental Disorders: DSM-IV-TR. 4th rev. ed. Washington, DC: American Psychiatric Association, 2000.
5 NCCN practice guidelines for the management of psychosocial distress. National Comprehensive Cancer Network. Oncology (Huntingt) 13 (5A): 113-47, 1999.
Adjustment or psychosocial adaptation to cancer has been defined 1,2,3,4,5 as an ongoing process in which the individual patient tries to manage emotional distress, solve specific cancer-related problems, and gain mastery or control over cancer-related life events. Adjustment to cancer is not a unitary, single event, but rather a series of ongoing coping responses to the multiple tasks associated with living with cancer. Patients are faced with multiple challenges that vary with the clinical course of the disease. Common periods of crisis and significant challenge include diagnosis, treatment (surgery, radiation, chemotherapy), posttreatment 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).7,
Coping strategies refer to those less frequently used and more situation-specific coping efforts, such as readjusting one’s daily routine or work schedule to adjust to the side effects of cancer treatment. Coping strategies are engaged in an effort to adjust. Although there are many successful coping strategies, 3 broad categories have been noted:2,8,9,10,
Problem-focused strategies help patients manage specific problems by directly trying to alter problem situations. Emotion-focused strategies help a person regulate his or her degree of emotional distress, and meaning-focused strategies help patients understand why this has happened and what impact cancer will have on their life. In general, persons who adjust well typically remain committed and actively engaged in the process of coping with cancer and continue to find meaning and importance in their lives. Conversely, persons who do not adjust well often become disengaged, withdraw, and feel hopeless. Thus, assessing the degree of engagement versus giving up may be a way to distinguish between successful and unsuccessful adjustment.5 For example, in a correlational study of adolescent cancer patients and their parents, engagement coping by the adolescent (including cognitive restructuring, seeking social support, expressing emotions, and problem solving) was associated with lower levels of distress; conversely, disengagement coping by parents (including problem avoidance, wishful thinking, social withdrawal, and self-criticism) was associated with increased distress.11 In a prospective investigation of different types of problem-focused coping strategies,146 women with early-stage breast cancer were studied. Study results showed that a strategy of concentrating on symptoms, measured at the end of treatment, was predictive of less improvement in physical and mental quality of life at 6 months follow-up, while a strategy of information seeking was associated with greater improvement in physical quality of life. These findings suggest that problem-focused coping consists of a variety of specific coping strategies, some of which may be beneficial while others may not be beneficial to quality of life.12,
One cognitive theory of coping 13 proposes that in response to significant life events, a person asks 2 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.14 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. One study of women with stage II or III breast cancer reported that higher levels of stress measured postsurgically at the time of diagnosis predicted lower physical and psychological quality of life. The stress measures included (a) number of stressful life events in the past year, (b) cancer-related traumatic stress symptoms, and (c) perceived global stress; all measures were predictive.15 Psychosocial adjustment/adaptation has been determined to be influenced by 3 broad categories of factors: cancer-derived, patient-derived, and society-derived.4,16 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 2 types of resources: intrapersonal coping resources and interpersonal social support 17,18 (e.g., family support),19 as well as consideration for stage of life 20 (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.
Situation-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).21 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 22 has described the normal responses to the crisis of cancer as consisting of 3 phases:
- Initial response.
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. Distress levels can be elevated for newly diagnosed patients awaiting surgery. Additional professional support to address problems such as fatigue, insomnia, and depressed mood can be helpful during this time.23,
Phase III, longer-term adaptation , consists of the extended time during which more long-lasting and permanent adjustment occurs. This period consists of weeks and months. During this period, patients are utilizing a variety of coping strategies and styles.9 Coping styles are longer-term, established ways for coping with many previous life events; coping strategies are situation-specific efforts to resolve particular cancer-related situations. This combination of longer-term coping styles and short-term coping strategies usually serves persons well in their efforts at adaptation. There is no single best way to cope. The individual differences persons bring to their encounters with cancer will result in varied coping styles and strategies.5,
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.”22 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.
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.24 Those who adjust well are able to balance their positive expectations with the realities of ongoing fears and apprehensions. Many patients report enhanced anxiety and worry related to fears of recurrence and decreasing frequency of medical surveillance via less frequent physician contacts. Other adjustment issues include living with uncertainty, returning to previous life roles, and hypervigilance to health concerns.6 During remission, patients begin a sequence of regular follow-up appointments with their oncologist. Normal anxiety and worry often intensify as the dates of follow-up appointments approach. Normal anxiety comes from concerns about recurrence and the related emotional consequences (e.g., re-entry into the patient role and renewed feelings of loss of control).25 Many patients find waiting for test results to be a particularly distressing experience.
In one of the few emprical studies of posttreatment adjustment, 94 women with stage 0, I, II, or III breast cancer who were completing radiation therapy were assessed on measures of depression, anxiety, and quality of life on the last day of treatment and at 2 weeks, 4 to 6 weeks, 3 months, and 6 months posttreatment. Results found elevated symptoms of depression, low-level anxiety, and diminished quality of life on the last day of treatment; however, by 2 weeks later, symptoms of depression decreased significantly and quality of life improved significantly. No other significant changes were found at any of the later posttreatment time periods, suggesting improvements in depression and quality of life occur quickly in most patients.26,
Normal adjustment to posttreatment and remission involves utilization of a variety of coping strategies; however, this phase often involves the frequent use of emotion-focused coping strategies (those designed to help regulate the normal emotional distress), given the variety of ambivalent emotional reactions. Those who adjust well are more likely to be comfortable expressing a wide range of both positive and negative emotions. Emotion-focused coping strategies include 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.
The transition from a curative treatment plan to one of palliative care is extremely difficult for cancer patients.22 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.27,
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 Disorderfor 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,28 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.29 The patient who successfully adjusts to the crisis of recurrence often shifts expectations and maintains hope in a variety of meaningful life activities. For example, a patient who has confidence that pain and suffering can be controlled will have hope for future quality of life. Patients who believe they are loved and cared for will have hope in their future relationships. Religion and spirituality play a very important role in helping many patients maintain hope. Religion or spirituality can provide a belief structure that helps in coping with the crises of recurrence. During recurrence and palliative care, patients are likely to utilize meaning-based coping strategies and are likely to seek comfort in prayer and in their religious practices/rituals or spiritual beliefs.
In a study of women with recurrent breast cancer, significant impairments in physical, functional, and emotional well-being were found within 1 month after recurrence; however, a patient’s self-efficacy (confidence in his or her ability to manage the demands of illness), social support, and family hardiness (family’s internal strength and ability to manage hardship and change) had positive effects on quality of life. Conversely, more distress about physical symptoms, additional life concerns, a sense of hopelessness, and a negative perception of illness or caregiving were associated with a lower quality of life.30,
The adjustment from posttreatment to long-term survivorship is gradual and extends over many years. However, most patients, despite various cancer diagnoses and treatments, adjust well,3 with some even reporting benefits to a cancer diagnosis (e.g., greater appreciation of life, reprioritizing of life values, strengthening of spiritual or religious beliefs).31,32,33,34 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, posttraumatic stress-like symptoms (such as persistent, intrusive thoughts, recurrent imagery associated with cancer treatments, feelings of estrangement from others),35 and concerns about body image and sexuality.3,
In one of the few prospective longitudinal studies of cancer survivors, 752 patients from 3 U.S. states were asked about a variety of psychosocial problems. About 1 year after diagnosis, 68% were concerned with their illness returning, approximately 60% were worried about recurrence, and 58% had fears of the future. In addition, approximately 2 out of 3 survivors were concerned about a physical health problem such as fatigue and loss of strength. Approximately 48% reported concerns with sleep difficulties, and 48% reported concerns with sexual dysfunction. Younger survivors (aged 18–54 years), women, nonwhites, unmarried survivors, and those with lower incomes reported more problems. In comparisons of 4 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.36,
1 Brennan J: Adjustment to cancer - coping or personal transition? Psychooncology 10 (1): 1-18, 2001 Jan-Feb.
2 Folkman S, Greer S: Promoting psychological well-being in the face of serious illness: when theory, research and practice inform each other. Psychooncology 9 (1): 11-9, 2000 Jan-Feb.
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 223-41.
4 Nicholas DR, Veach TA: The psychosocial assessment of the adult cancer patient. Prof Psychol 31 (2): 206-15, 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 211-22.
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 662-75.
7 Schou I, Ekeberg Ø, Ruland CM, et al.: Pessimism as a predictor of emotional morbidity one year following breast cancer surgery. Psychooncology 13 (5): 309-20, 2004.
8 Pearlin LI, Schooler C: The structure of coping. J Health Soc Behav 19 (1): 2-21, 1978.
9 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.
10 Ahmad MM, Musil CM, Zauszniewski JA, et al.: Prostate cancer: appraisal, coping, and health status. J Gerontol Nurs 31 (10): 34-43, 2005.
11 Trask PC, Paterson AG, Trask CL, et al.: Parent and adolescent adjustment to pediatric cancer: associations with coping, social support, and family function. J Pediatr Oncol Nurs 20 (1): 36-47, 2003 Jan-Feb.
12 Ransom S, Jacobsen PB, Schmidt JE, et al.: Relationship of problem-focused coping strategies to changes in quality of life following treatment for early stage breast cancer. J Pain Symptom Manage 30 (3): 243-53, 2005.
13 Lazarus RS, Folkman S: Stress, Appraisal, and Coping. New York, NY: Springer Publishing Co, 1984.
14 American Psychiatric Association.: Diagnostic and Statistical Manual of Mental Disorders: DSM-IV-TR. 4th rev. ed. Washington, DC: American Psychiatric Association, 2000.
15 Golden-Kreutz DM, Thornton LM, Wells-Di Gregorio S, et al.: Traumatic stress, perceived global stress, and life events: prospectively predicting quality of life in breast cancer patients. Health Psychol 24 (3): 288-96, 2005.
16 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.
17 Kroenke CH, Kubzansky LD, Schernhammer ES, et al.: Social networks, social support, and survival after breast cancer diagnosis. J Clin Oncol 24 (7): 1105-11, 2006.
18 Arora NK, Finney Rutten LJ, Gustafson DH, et al.: Perceived helpfulness and impact of social support provided by family, friends, and health care providers to women newly diagnosed with breast cancer. Psychooncology : , 2006.
19 Baider L, Ever-Hadani P, Goldzweig G, et al.: Is perceived family support a relevant variable in psychological distress?. A sample of prostate and breast cancer couples. J Psychosom Res 55 (5): 453-60, 2003.
20 Ganz PA, Guadagnoli E, Landrum MB, et al.: Breast cancer in older women: quality of life and psychosocial adjustment in the 15 months after diagnosis. J Clin Oncol 21 (21): 4027-33, 2003.
21 Weisman AD, Worden JW: The existential plight in cancer: significance of the first 100 days. Int J Psychiatry Med 7 (1): 1-15, 1976-77.
22 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 943-58.
23 Visser MR, van Lanschot JJ, van der Velden J, et al.: Quality of life in newly diagnosed cancer patients waiting for surgery is seriously impaired. J Surg Oncol 93 (7): 571-7, 2006.
24 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.
25 Harpham WS: After Cancer: A Guide to Your New Life. New York, NY: WW Norton & Company, 1994.
26 Deshields T, Tibbs T, Fan MY, et al.: Ending treatment: the course of emotional adjustment and quality of life among breast cancer survivors immediately following radiation therapy. Support Care Cancer 13 (12): 1018-26, 2005.
27 Cherny NI, Coyle N, Foley KM: Suffering in the advanced cancer patient: a definition and taxonomy. J Palliat Care 10 (2): 57-70, 1994 Summer.
28 Dienstfrey H: Training for cancer: an interview with Michael Lerner. Advances: The Journal of Mind-Body Health 10 (2): 27-37, 1994.
29 Beck AT, Weissman A, Lester D, et al.: The measurement of pessimism: the hopelessness scale. J Consult Clin Psychol 42 (6): 861-5, 1974.
30 Northouse LL, Mood D, Kershaw T, et al.: Quality of life of women with recurrent breast cancer and their family members. J Clin Oncol 20 (19): 4050-64, 2002.
31 Polinsky ML: Functional status of long-term breast cancer survivors: demonstrating chronicity. Health Soc Work 19 (3): 165-73, 1994.
32 Curbow B, Somerfield MR, Baker F, et al.: Personal changes, dispositional optimism, and psychological adjustment to bone marrow transplantation. J Behav Med 16 (5): 423-43, 1993.
33 Belec RH: Quality of life: perceptions of long-term survivors of bone marrow transplantation. Oncol Nurs Forum 19 (1): 31-7, 1992 Jan-Feb.
34 Tartaro J, Roberts J, Nosarti C, et al.: Who benefits?: distress, adjustment and benefit-finding among breast cancer survivors. J Psychosoc Oncol 23 (2-3): 45-64, 2005.
35 Smith MY, Redd WH, Peyser C, et al.: Post-traumatic stress disorder in cancer: a review. Psychooncology 8 (6): 521-37, 1999 Nov-Dec.
36 Baker F, Denniston M, Smith T, et al.: Adult cancer survivors: how are they faring? Cancer 104 (11 Suppl): 2565-76, 2005.
Nearly every patient having to deal with a wide variety of stressors at different stages of disease and treatment experiences some level of distress;1,2 however, only a small percentage of those in distress are currently receiving appropriate help.3 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 posttreatment 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 (Refer to the
Overviewsection of this summary.)
The psychometric properties of the NCCN rapid-screening measure (a 0–10 visual analogue scale, in the form of a thermometer labeled with "No Distress" at 0, "Moderate Distress" at the midpoint, and "Extreme Distress" at 10) have been investigated.4 It was found to have reasonable convergent and divergent validity when compared to 2 more well-established, multidimensional symptom inventories. This very brief, rapid-screening procedure was found to have a moderate ability to accurately detect distress as defined by scores indicative of "caseness" on the 2 symptom inventories. When testing specific cutoff scores to maximize sensitivity and specificity, no single cutoff was discovered that maximized accuracy of classification. Thus, it was recommended that varying cutoff scores result in different referral recommendations, such that low scores result in no referral, moderate scores result in an optional referral, and high scores strongly recommend further interventions.
Prevalence and Predictors of Distress
A few studies have investigated the prevalence of distress as measured by the NCCN Distress Thermometer.4,5 6,7,8,9 Prevalence rates range from 22% to 58%. Different cutoff scores have been used, with most studies using a cutoff of 4 or 5. Before these empirical investigations were conducted, the NCCN recommended use of a cutoff score of 5. An initial pilot study 7 reported that 28.6% of 93 men with prostate cancer reported distress scores higher than 5 on the 0–10 scale. Another study (n = 50) reported that 50% of men and women who were potential candidates for bone marrow transplant reported distress scores higher than 5. A third study 4 of 68 mixed types of cancer patients recommended the use of a range of cutoff scores with corresponding levels of intervention. For example, scores between 0 and 3 would receive no further services, scores between 4 and 6 would receive educational information about available resources (e.g., self-help groups, support groups, mental health professionals) and a referral that is at the option of the patient, and scores between 7 and 10 would receive complete psychosocial assessment and ongoing services by an appropriate health care professional. Utilizing this format, the study found that 22% of patients scored within the 7-10 range, and an additional 31% scored within the 4-6 range, resulting in 53% who reported distress scores higher than 4 on the 1-10 scale. The largest study to date (n = 380) reported that 58% of females and 42% of males reported distress scores higher than 4. This study also investigated predictors of distress and found that those patients who reported a score of 4 or higher were more likely to be women, to have poorer functional performance (self-reported Karnofsky Performance Scale), and to have reported (on the Problem List that accompanies the Distress Thermometer) problems with housing, dealing with children, dealing with partner, depression, fears, nervousness, sadness, worry, and 14 of 20 physical ailments.
Screening and assessment have been viewed as 2 distinct processes.10,11 Screening is a rapid method of identifying patients with psychosocial distress, typically done by using brief self-report questionnaires administered by non–mental-health professionals with the goal of determining who needs referral for more extensive assessment.12 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.10,
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. Most screening for psychosocial distress is focused on the individual patient; however, some family-focused screening procedures are being developed.13,
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 10 by a qualified health care professional (e.g., social worker, psychologist, psychiatrist, palliative care specialist, pastoral counselor). Few empirical studies have evaluated the impact of structured screening programs. In 2 randomized, longitudinal, intervention studies no significant differences in quality of life were found.14,15 In one of these studies, however, a subgroup of moderately to severely depressed patients showed a significant reduction in depression following the intervention. Thus, further empirical evaluation of the effectiveness of screening programs is needed. The following examples will help to illustrate the process.
Model screening programs
Memorial Sloan-Kettering Cancer Center 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 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.
At Johns Hopkins Cancer Center, all new patients are given an 18-item version of the Brief Symptom Inventory (BSI),16 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.11 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, psychoeducational presentations).
The Oncology Symptom Control Research group at Community Cancer Care typically screens all incoming patients with the Zung Self-Rating Depression Scale (ZSDS).17,18 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.19 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
The NCCN single-item, rapid-screening instrument asks patients to rate their distress on a scale of 0 (“no distress”) to 10 (“extreme distress”). On an accompanying problem list they are asked to indicate what has been a problem for them in the past week. Studies 4,5,6 have tested the ability of the single-item measure to identify patients in distress, investigated sensitivity and specificity in an effort to recommend a cutoff score, and identified prevalence rates. One study 4 found the Distress Thermometer to have reasonable convergent and divergent validity when compared with 2 more well-established inventories (BSI and BSI-18; see table below) but did not recommend a specific cutoff score. A larger, multisite study (n = 380) found that a cutoff score of 4 resulted in acceptable sensitivity (.77, .70) and specificity (.68, .70) when compared with 2 other widely used yet longer self-report questionnaires (hospital anxiety and depression scale [HADS] and BSI; see table below).5 Thus it appears that the single-item rapid-screening Distress Thermometer is comparable to other well-established self-report questionnaires (BSI, BSI-18, HADS) in accurately classifying patients with and without distress. The following table is a list of self-report screening instruments used for identification of psychosocial distress.
Self-Report Screening Instruments Used for Identification of Psychosocial Distress in Cancer Patients
Title Items (no.) Time (min) Constructs measured
Distress Thermometer & Problem List 11 Varies 2–3 Distress and problems related to the distress
Brief Symptom Inventory (BSI) 16 53 7–10 Somatization, anxiety, interpersonal sensitivity, depression, hostility, phobic anxiety, paranoid ideation, psychoticism, obsessive-compulsiveness
Brief Symptom Inventory (BSI-18) 16, 18 3–5 Somatization, depression, anxiety, general distress
Hospital Anxiety and Depression Scale (HADS) 20,21,22, 14 5–10 Symptoms of clinical depression and anxiety
Functional Assessment of Chronic Illness Therapy (FACIT; formerly the FACT) 23 27 5–10 4 domains of quality of life: physical, functional, social/family, emotional well-being
Profile of Mood States (POMS) 24 65 3–5 6 mood states: anxiety, fatigue, confusion, depression, anger, vigor
Zung Self-Rating Depression Scale 25, 20 5–10 Symptoms of depression
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.7,8,26,27 Thus, it is important to consider how the primary oncology team can introduce the need for further 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. (Refer to the
General Factors Influencing Adjustmentsection 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.
Psychosocial Interventions for Distress
The efficacy of psychosocial interventions in adult cancer patients is supported by an extensive literature.28,29,30,31 Reviews have concluded that, in general, psychosocial interventions for cancer patients have shown positive benefits.
Psychosocial interventions have generally been defined as nonpharmacologic interventions that include a variety of psychological and educational components. Typical components include relaxation training, cognitive and behavioral coping strategies, cancer education/information sessions, and group social support. Interventions have included various combinations of these components, have varied in length (single session to multiple weekly sessions), and have been administered in both individual and group formats. The most common patient population has been U.S. Caucasian women of middle to higher socioeconomic status who have breast cancer; however, some studies include mixed cancer diagnoses, and in recent years, more studies from European countries have appeared.28 Outcome measures have varied and have included emotional adjustment (e.g., depression, anxiety), functional impairment (e.g., return to work, social roles), disease-related symptoms (e.g., nausea/vomiting, fatigue, pain), health behaviors (diet, smoking, exercise) and immune system functioning.28,29 A biobehavioral model 28 hypothesizing psychological, behavioral, and biologic pathways from cancer stressors to disease outcome has guided much of this research; however, the most common outcome measured has been emotional adjustment.
These positive effect sizes indicate that the average patient receiving the intervention is better off than between 57% and 65% of those not receiving the intervention. Although positive benefits have been found, their clinical significance has been questioned. Reviewers have offered varying conclusions regarding the size of these positive effects,29 ranging from negligible for depression, to small for overall emotional outcomes, to moderate for anxiety.30,
Effect sizes may be related to the timing of the intervention and patient selection procedures. For most patients, levels of psychosocial distress are highest during the earliest days of their cancer experience and, for many, dissipate quickly. Thus, if interventions are offered later in the cancer experience (weeks or months after diagnosis and treatment), patients may be experiencing less distress than they would have experienced if interventions had been offered earlier, making large effects more difficult to detect.32 Two meta-analytic reviews 29,30 report effect sizes of 0.19 for depression 30 and functional adjustment,29 0.24 for emotional adjustment,29 0.26 for treatment- or disease-related symptoms,29 0.28 for global measures of outcome,29 and 0.36 30 for anxiety. Similarly, a number of reviews 28,29,30,31 note the influence of patient selection procedures on the strength of outcomes. In many studies, patients are selected simply because they have a diagnosis of cancer, regardless of the presence of any distress. When patients are selected because of the presence of distress, however, the strength of the interventions is greater, with effect sizes of 0.94 for anxiety and 0.85 for depression being reported.30 With these large effect sizes, the average patient receiving the intervention is advantaged, compared with the 80% to 83% of those not receiving the intervention.
In summary, it appears that when psychosocial interventions are offered to patients who are found to be experiencing distress (e.g., anxiety, depression), the efficacy of the intervention is very strong. Thus, the overall positive benefit for psychosocial interventions seems to be greater with those who seem to need it most.29,30,
Randomized trials of group interventions for early-stage breast cancer
The studies described below are representative of randomized clinical trials testing the efficacy of small-group psychosocial interventions for U.S. women with early-stage breast cancer. Note that the studies vary in total treatment time, from 8 hours 33 to 20 hours 32,34 to 27 hours,35 and have a variety of intervention components.
In the first study, investigators 32 tested the efficacy of a 10-week, 2-hours-per-week group cognitive-behavioral stress management intervention. One hundred newly treated women with breast cancer were randomly assigned to either the intervention or to a control condition. The psychosocial intervention consisted of 10 2-hour group sessions during which didactic material was presented, intermixed with a variety of experiential exercises and homework assignments. The overall intervention focused on learning to cope better with daily cancer-related stressors. Topics included progressive muscle relaxation with imagery, cognitive restructuring, interpersonal conflict resolution, assertion training, and enhanced social support. The control condition consisted of a day-long seminar in which participants received a condensed version of the intervention with significantly less time to interact within the group. Results showed (a) a decrease in depression, (b) no change in other measures of emotional distress, and (c) an increase in “benefit finding” (i.e., reporting that having breast cancer had made positive contributions to their lives) and optimism. In a second larger (n = 199) randomized study conducted by the same research group 34 on women with stage 0 to stage III nonmetastatic breast cancer, a similar intervention produced somewhat greater sustained decreases in cancer-related intrusive thoughts and sustained improvements in anxiety.
A second example is a study 35 of an 18-week, 1.5-hours-per-week group intervention consisting of psychoeducational strategies designed to reduce stress, enhance mood, alter health behaviors (diet, exercise, smoking), and enhance adherence to cancer treatments. Outcome measures included emotional distress, health behaviors, and immune responses. Two hundred twenty-seven women, all of whom had received surgery for regional breast cancer, were randomly assigned to either the intervention group or an assessment-only control condition. Results showed significantly less anxiety, improved social support, better dietary behaviors, and reduced smoking. Immune responses in the intervention group were consistent with the psychological and behavioral changes. This study is a strong example of efforts to measure changes in a variety of biobehavioral (psychological, behavioral, immune) variables after a psychosocial intervention.
The third study 33 evaluated an educational intervention consisting of 2-hour once-per-month group sessions for 4 consecutive months. Participants were 252 women younger than 50 years who had early-stage breast cancer, who had recently completed nonhormonal adjuvant treatment, and who were facing the transition from active treatment to posttreatment survivorship. They were randomly assigned to one of three groups: a standard medical care group, a nutrition education group, or a psychosocial education group. The psychosocial and nutrition education groups included information dissemination, discussion, and some activities/exercises. Topics rotated monthly, and participants could join a group at any time (i.e., the groups were open groups). In general, patient-to-patient interaction was minimal because sessions were more didactic presentations. The psychosocial education group presented topics relevant to younger women with breast cancer, such as talking with children about cancer, how to carry on with life after a diagnosis, relationships/intimacy with partners, hormones and cancer, and genetic bases of breast cancer. The nutrition education group included information about choosing fruits, vegetables, and low-fat foods and how to consistently incorporate these foods into daily life. Shopping, low-fat cooking, eating out, and other related topics were presented. Results showed that patients in both of the intervention groups reported fewer depressive symptoms and better physical functioning at a 13-month follow-up. This study is an example of a more targeted intervention designed for a specific patient population (younger women with breast cancer) at a specific time in their treatment course (soon after completion of active treatment).
Problem-solving, focused, individual psychotherapy
A variety of individual psychosocial interventions have been studied. One study emphasized the development of problem-solving abilities. In this study, the psychosocial intervention consisted of 10 1.5-hour weekly individual psychotherapy sessions (either with or without a significant other present) that focused on training to become an effective problem solver. Four rational problem-solving tasks were emphasized that included skills in (a) better defining and formulating the nature of problems, (b) generating a wide range of alternative solutions, (c) systematically evaluating potential consequences of a solution while deciding on the optimal ones, and (d) evaluating the eventual outcome after solution implementation. Between-session homework with tasks relevant to each step was assigned, and patients received a written manual and were encouraged to refer to it as problems arose. One hundred thirty-two adult cancer patients with mixed cancer diagnoses were randomly assigned to two treatment groups and one wait-list control. The two treatment groups included individual problem-solving therapy alone and problem-solving therapy with a significant other (e.g., spouse, friend, adult child) present. Overall results showed that participants in the two treatment groups were more effective problem-solvers and experienced less psychological distress and improved quality of life. No differences between treatment groups were found.36 In this example, an individual psychotherapeutic intervention designed to increase a patient’s problem-solving abilities was shown to result in a better quality of life and less psychological distress.
Self-administered stress management training for chemotherapy
In a randomized trial of 411 mixed-diagnosis cancer patients,37 traditional psychosocial care was compared with professionally administered and self-administered stress management for chemotherapy. The professional stress management consisted of a 60-minute individual educational session that included a review of common sources of chemotherapy-related stress and three specific stress-management techniques: paced abdominal breathing, progressive muscle relaxation with imagery, and the use of coping self-statements. The professional provided the patient with an audiotape of the individual session, prescribed daily practice of the three techniques, and met briefly with the patient before his or her first chemotherapy session. In the self-administered group, a professional met with each patient for approximately 10 minutes, provided him or her with a packet of instructional materials about coping with chemotherapy, and briefly instructed the patient on their use. These materials included a 15-minute videotape, a 12-page booklet, and a 35-minute relaxation audiotape. These materials included all of the same information provided in the professionally administered group. Patients in this group were instructed to first view the videotape and then review the booklet, following its instructions for further training, practice, and use of the various techniques.
Results of this novel approach found that patients in the self-administered intervention reported significant