Prevalence and Predictors of Distress
Screening
        Model screening programs
        Self-report screening instruments
Psychosocial Assessment
Psychosocial Interventions for Distress
        Psychosocial interventions

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 Overview section 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 two more well-established, multidimensional symptom inventories. This very brief, rapid-screening procedure was found to have a moderate ability to accurately detect distress as defined by scores indicative of “caseness” on the two-symptom inventories. When 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. The accuracy of these ultrashort screening methods (containing fewer than five items and taking less than 2 minutes to complete) have been investigated.[4,5] A review of 38 studies testing the accuracy of these methods for identifying depression, anxiety, and distress found that the ultrashort methods achieve modest overall accuracy. These screening methods were best at ruling out anxiety, depression, or distress and performed poorly at accurately ruling in anxiety, depression, or distress, thereby resulting in a high number of false positives. Thus, it is recommended that when an ultrashort screening method is used, a more complete psychosocial assessment interview should follow the initial screening.

A few studies have investigated the prevalence of distress as measured by the NCCN Distress Thermometer.[4,6-10] Prevalence rates range from 22% to 58%. Different cutoff scores have been used, with most studies using a cutoff score of 4 or 5. Before these empirical investigations were conducted, the NCCN recommended use of a cutoff score of 5. An initial pilot study [8] 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 range of 7 to 10, and an additional 31% scored within the range of 4 to 6, resulting in 53% who reported distress scores higher than 4 on the scale of 1 to 10. The largest study to date (n = 380) reported that 58% of females and 42% of males reported distress scores higher than 4.[6] In regard to prevalence of distress along the clinical course, one study of 236 newly diagnosed breast cancer patients (awaiting their initial consultation with a surgical oncologist) found that 41% reported distress scores higher than 5 on the NCCN Distress Thermometer. In this same group of women, 11% reported symptoms suggestive of major depression, and 10% reported symptoms of posttraumatic stress.[11]

Regarding predictors of distress, in a large sample (n = 380) of patients with mixed cancer diagnoses, those reporting a score of 4 or higher on the Distress Thermometer 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.[6]

In regard to predictors of posttreatment distress, a longitudinal, observational study of 151 women with early-stage breast cancer found that physical symptoms and side effects experienced during treatment were predictive of posttreatment cancer-related distress, amounting to 6% of the total 24% of variance accounted for.[12] In addition, demographic variables associated with this posttreatment cancer-related distress included younger age, nonwhite racial status, and less formal education. Clinical variables associated with distress included having a mastectomy rather than lumpectomy, receiving hormonal treatment, and the presence of a diagnosable mental disorder at the time of recruitment into the study.

Screening and assessment have been viewed as two distinct processes.[13,14] Screening is a rapid method of identifying patients with psychosocial distress, typically done by using brief self-report questionnaires administered by non–mental-health professionals with the goal of determining who needs referral for more extensive assessment.[15] The psychosocial assessment of the cancer patient is a more in-depth clinical interview focused on factors relevant to coping and adaptation. Mental health professionals do the assessment interview with the goal of determining how well a patient is adjusting.[13]

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.[16]

Administration of a screening instrument involves a brief 5- to 10-minute process in which each patient answers a series of simple, straightforward questions about distress, either orally, or via a self-report questionnaire or computer. Answers are scored and evaluated on the basis of previously determined criteria. If scores are above the defined criteria, then a formal referral to the appropriate discipline (social work, psychology, psychiatry, palliative care, pastoral care) is made. Distress management then begins with a more comprehensive face-to-face psychosocial assessment interview [13] by a qualified health care professional (e.g., social worker, psychologist, psychiatrist, palliative care specialist, pastoral counselor). Few empirical studies have evaluated the impact of structured screening programs. In two randomized, longitudinal, intervention studies no significant differences in quality of life were found.[17,18] In one of these studies, however, a subgroup of moderately to severely depressed patients showed a significant reduction in depression following the intervention. Thus, further empirical evaluation of the effectiveness of screening programs is needed. The following examples will help to illustrate the process.

Memorial Sloan-Kettering Cancer Center has experimented with a distress thermometer modeled after those used to measure 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),[19] 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.[14] 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).[20,21] 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.[22] 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.

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 [4,6,7,23] 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 two 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 two other widely used yet longer self-report questionnaires (hospital anxiety and depression scale [HADS] and BSI; see table below).[6] 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 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, or pastoral counselors), depending on the nature of the distress.

The primary oncology team (oncologist, nurse, palliative care specialist, social worker, and 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.[8,30,9,31] 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 to understand you as a whole person, and we want to provide the best care possible for you—physically, emotionally, socially, and spiritually.
• As you may realize, a serious illness can affect 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 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.

The efficacy of psychosocial interventions in adult cancer patients is supported by an extensive literature.[32-35] 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.[32] 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.[32,33] A biobehavioral model [32] 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.

Although positive benefits have been found, their clinical significance has been questioned. Reviewers have offered varying conclusions regarding the size of these positive effects,[33] ranging from negligible for depression, to small for overall emotional outcomes, to moderate for anxiety.[34]

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.[36] In one study, 249 breast cancer patient-partner dyads were randomly assigned to one of four groups: a control group receiving standard disease management, a standardized psychoeducation group, a group receiving telephone counseling, or a group receiving psychoeducation plus telephone counseling. Patients and partners who received the study interventions had less side-effect distress and severity as well as higher levels of psychological well-being than those who received standard care. In addition, the study supports the efficacy of low-cost, replicable interventions by video and telephone to achieve these physical and psychological benefits.[37] Two meta-analytic reviews [33,34] report effect sizes of 0.19 for depression [34] and functional adjustment,[33] 0.24 for emotional adjustment,[33] 0.26 for treatment- or disease-related symptoms,[33] 0.28 for global measures of outcome,[33] and 0.36 [34] for anxiety. 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.

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.[34,33]

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 [38] to 20 hours [36,39] to 27 hours,[40] and have a variety of intervention components.

In the first study, investigators [36] 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 ten 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 [39] 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 [40] 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 [38] 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).

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 ten 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.[41] 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.

In a randomized trial of 411 mixed-diagnosis cancer patients,[42] 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 significantly better physical functioning, vitality, and mental health and fewer role limitations than those reported by either of the other two groups. Patients in the professionally administered group reported no better outcomes than patients in the traditional-care group. Costs of the self-administered group were found to be significantly lower than those of the other two groups.

A novel intervention [43] tested the effects of a brief (15- to 20-minute) clinic tour for new patients in a medical oncology clinic. The tour included an opportunity to see the phlebotomy, nursing, and chemotherapy areas; the distribution of written materials about clinic hours and procedures; and a time to ask questions. One hundred and fifty consecutively referred patients who had a variety of cancers were randomly assigned to either the clinic orientation condition or to standard care. Intervention patients showed less anxiety, less mood disturbance, and fewer depressive symptoms at a 1-week follow-up. In addition, these patients reported more knowledge of clinic procedures, more confidence in their physicians, and higher levels of satisfaction and hope. This is an example of how even a simple, minimal intervention can have positive benefits.

In one study, a group of women scheduled for excisional breast biopsy (N = 90) were randomly assigned either to a brief session (15 minutes) of hypnosis and guided relaxation delivered by trained clinical psychologists on the day of surgery or to an attention-control empathic listening session of equal length. Presurgery distress was measured by the visual analog scale (VAS) and the short version of the Profile of Mood States (SV-POMS). The hypnosis session markedly decreased anticipatory anxiety and increased relaxation measured just prior to the biopsy.[44]

The Comprehensive Health Enhancement Support System (CHESS) [45] is an online resource for cancer patients that has been available for more than 5 years. It has two components: (1) didactic material and (2) narrative information about medical, practical, and psychosocial issues. This study addressed the relative appeal and value of these two components separately for Caucasian and African American women who had been diagnosed with breast cancer (three-fourths of participants had early-stage disease). The average time spent online with either type of resource was slightly longer for African American women (didactic: 19.7 minutes, standard deviation [SD] = 31.10; narrative: 17.16 minutes, SD = 38.19) than for Caucasian women (didactic: 18.30 minutes, SD = 28.62; narrative: 15.78 minutes, SD = 36.60) but had substantially more effect. Before using the resource, African American women were markedly lower in health care participation; after use, African American women increased health care participation markedly, regardless of type of resource, surpassing the level of health care participation by Caucasian women, particularly in regard to the effect of the didactic services. This result suggests that while the use of both the didactic and narrative CHESS resources is valuable for both groups, it is particularly useful for African American women; the narrative resource version appears to differentially have more impact for Caucasian women.

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