As people live longer after diagnosis and treatment for cancer, attention has turned to survivors’ quality of life and the distress they experience because of their illnesses. Recent studies of adults of different ages and with different cancer diagnoses have addressed psychological distress and psychiatric symptoms experienced by people with cancer (including possible neurobiological factors associated with distress), coping and personal growth in cancer survivorship, and psychosocial interventions to address the distress of patients and survivors. This article will focus primarily, but not exclusively, on the psychosocial distress and coping of cancer survivors who have completed their initial treatment and are now disease free. More research is needed to elucidate the ongoing psychosocial and spiritual problems of this group, to delineate the most effective interventions for their continuing psychosocial and spiritual needs, and to identify which groups might require which types of intervention. Almost no research has examined the efficacy of psychosocial and behavioral interventions to treat the distress of people not currently undergoing treatment.
The National Comprehensive Cancer Network (NCCN) in 2003 addressed the stigma attached to psychological problems and chose to use the word “distress” because it is more readily accepted and less embarrassing than a psychological or psychiatric term. 1 In the context of cancer, distress has been defined as “a multifactorial unpleasant emotional experience of a psychological (cognitive, behavioral, emotional), social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment.” 2 Feelings of distress range along a continuum, from sadness and vulnerability to disabling depression.
Recently, exciting work with a new diagnostic tool called the Distress Thermometer (DT) has shown that this single-item measure compares favorably with longer measures such as the Hospital Anxiety and Depression Scale and an 18-item Brief Symptom Inventory. 3 The DT and accompanying Problem List can make it easier to screen patients in the clinic and to identify distress stemming from emotional, spiritual, or religious concerns; practical or family issues; or physical problems.
In the studies reviewed in the present article, 18% (in a sample of people diagnosed in the past eight years 4) to 43% of cancer survivors reported distress, 5 with the studies varying in the type of cancer, time since diagnosis, stage of disease, and other factors.
Several studies on prevalence rates have found that one-third of the cancer population experiences distress and may profit from early psychosocial intervention. 6 Nurses with cancer may experience a particular form of distress, termed “insider vulnerability,” due to their extensive understanding of the illness and treatment as compared to that of most patients. 7
Studies have found an elevated risk of psychosocial distress within the cancer population for women, 3, 8–10 younger people, 5, 8, 9 those over age 70, 5, 9 members of certain ethnic groups (such as Southeast Asian, Aboriginal, and South Asian) 8; those with lower income, 8 lower levels of education, 10 poor performance status, 3 and practical, family, emotional, and physical problems 3; patients who are hospitalized 9; those with a worse prognosis 5; and those with a history of emotional difficulties. 9, 10 Few studies have examined distress specifically in long-term survivors.
Consensus-based guidelines developed by the Distress Management Panel of the NCCN recommend screening all patients regularly for psychosocial distress as a part of routine cancer care, including follow-up care. 1 These guidelines are based on evidence that oncologists and oncology nurses do not recognize psychological distress, despite its prevalence in the cancer population and its association with greater nonadherence to treatment recommendations, poorer satisfaction with care, and poorer quality of life across many domains. 3 When health care professionals fail to recognize distress, cancer patients and survivors do not receive effective pharmacologic and nonpharmacologic interventions for relieving it. 3
DEPRESSION AND ANXIETY
The clinical definitions of depression and anxiety can be found in the Diagnostic and Statistical Manual of Mental Disorders, 4th edition, text revision (DSM-IV-TR). 11 One in four women and one in eight men will require treatment for depression during their lifetimes. 12 Between 10% and 50% of cancer patients have been found to have depression, depending on the stage of disease and the methods used to assess depression. 13 Most studies report the prevalence of major depression in cancer patients to be 20% to 25%, increasing with higher levels of physical disability, advanced illness, and pain. 14 Of this group, approximately 25% present with depression at initial diagnosis, and approximately 75% develop depression subsequently. 15,16 Even when the most stringent criteria are used, 5% to 15% of patients with cancer meet the criteria for major depression; another 10% to 15% present with less severe depressive symptoms. 12 These symptoms may include normal sadness in the process of adjusting to a cancer diagnosis. 17 If this sadness persists beyond two weeks, health care professionals should suspect depression and treat aggressively, especially if core symptoms of depression are present. These include helplessness, hopelessness, poor self-esteem, feelings of guilt or worthlessness, and suicidal ideation. 16, 18
One of the challenges in measuring and assessing depression in patients undergoing cancer treatment is that symptoms such as poor appetite, weight loss, fatigue, insomnia, inability to concentrate, and possibly pain may be related to cancer and treatment, as well as being manifestations of depression. 19–21 The Beck Depression Inventory for Primary Care 19 and the depression subscale of the Hospital Anxiety and Depression Scale 20 are suggested for serial self-report assessments because they demonstrate acceptable internal consistencies for clinical use. 16
Depression has been associated with decreased cancer survivorship. A 10-year follow-up study found that depressive symptomatology was associated with shorter survival time. This study suggested that a cancer diagnosis and the physical effects of the disease may predispose people to distress, which if maintained over time will enhance disease progression. 22
Depression is a progressive disease most responsive to early interventions because of the progressive nature of alterations in neurologic circuits and neurotransmitters. 16 Researchers have proposed a conceptual framework in which activation of the proinflammatory cytokine system in cancer patients, which is a consequence of treatment, may induce a “sickness syndrome” characterized by anxiety, irritability, a lack of ability to get pleasure from usually pleasurable activities, and a lack of energy, among other symptoms relating to depression. 23 In support of this hypothesis, a study of patients with melanoma found that physiologic markers of stress were elevated in those who later developed depression. 24 In turn, patients who reported feelings of sadness, pessimistic thoughts, and sleep disturbances before starting treatment had a higher risk of depression after receiving immunotherapy. 25 If confirmed, these findings would strongly support the use of such physiologic and behavioral measures to identify patients and survivors at risk for depression and the prophylactic administration of ration of antidepressant medication.
Anxiety in cancer survivors is attributed to fear of recurrence, 4, 26–28 additional treatment, and the potential for adverse effects. 29 Anxiety is sometimes difficult to assess in the cancer survivor population. Stark and colleagues found that 48% of a sample population with a variety of cancer diagnoses had an anxiety disorder when assessed by questionnaire. 30 However, when reassessed by diagnostic interview, only 18% of the group fulfilled the criteria for anxiety disorders.
POSTTRAUMATIC STRESS DISORDER
The clinical definition of posttraumatic stress disorder (PTSD) can be found in the DSM-IV-TR. 11 Cancer patients experience symptoms of PTSD at a rate of 4% to 19%, as a result of diagnosis, treatment, or a past traumatic episode. 31 A study of long-term breast cancer survivors found that 18% of women had full PTSD and 58% experienced partial PTSD (two out of three PTSD symptom groups). 29 Women who were the least ill when receiving chemotherapy were more at risk for PTSD symptoms when examined up to 60 months after treatment. The authors of the study hypothesized that at diagnosis of an early cancer stage, the healthier a woman’s perception of herself, the more difficulty she had in accepting the need for chemotherapy. 29 An increased risk of PTSD is also associated with being female, younger, less educated, and with having a lower income and less social and emotional support. 31
Researchers have begun to study the physiologic aspects of PTSD in the cancer population. Ronson suggested that psychologically adjusting to cancer may activate physiologic elements of the body’s stress response. 32 Yehuda hypothesized that negative feedback inhibition of cortisol, characteristic of PTSD, regulates the hypothalamic-pituitary-adrenal axis and cortisol alterations observed in cancer. 33 Previous work has shown an association between PTSD and the amygdala. 34 A brain imaging study of breast cancer survivors found that women who reported intrusive recollections of their cancer experience (a key feature of PTSD) had a smaller amygdala than women who did not, even after controlling for effects of major depression. 35
Nurses play a key role in helping patients cope with cancer and treatment by respecting individual differences and preferences, appreciating patient perspectives, and understanding coping as a process. Nurses also help patients cope by focusing on those specific elements of distress that may be modifiable. 36
Currently, there is considerable interest in how cancer survivors derive meaning from their experience with the disease. 37–41 Studies have found that spirituality is an important way of coping as well as of restoring a connection to self and finding purpose and meaning. 42, 43 And in a study of Chinese cancer survivors, positive attitude has been found to be the most important determinant of “positive changes or transformation” after the trauma of the disease. 37
How coping affects disease outcome remains unclear. A metaanalysis of 36 studies found no association between psychological coping styles and cancer survival and recurrence. 44 Most of those studies investigated “fighting spirit” (10 studies) or feelings of helplessness or hopelessness (12 studies). The evidence that other coping styles play an important role was also, for the most part, weak. However, two recent studies found that a depressive coping style 45 and depressive symptomatology 22 were associated with shorter survival times.
Although at least one-third of the cancer population experiences some variety of distress, only about 10% receive any psychosocial therapy. 46 In a series of studies we conducted at the Canadian Cancer Society, 9% to 14% of patients used psychosocial support services, and another 6% expressed a need for such services. 4, 26, 27, 47 In a later study, 23% had used psychosocial services, and 80% found these services to be helpful (unpublished data).
In a study of breast cancer patients undergoing radiotherapy, 31% of the patients suffered from moderate to severe anxiety or depression or both. 48 But more patients, 42%, expressed interest in supportive counseling. Patients with elevated levels of distress or those expressing interest in psychosocial support were offered counseling, and 69% of the 58 patients offered such support accepted it.
A literature review of psychosocial interventions concluded that interventions can help people with cancer to cope better with very distressing situations, can improve their affective state, and can help to reduce the adverse effects of disease or its treatment while positively affecting quality of life. 49 The author identified five types of effective intervention, best used in combination: education about the disease; behavioral training such as relaxation, yoga, and hypnosis; stress management; cognitive-behavioral therapy, including training in coping skills; and support in group, peer-led, or professionally led contexts.
Patients in different cancer stages may benefit from different interventions. Newly diagnosed patients or those with good short-term prognoses may benefit from institution-based psychoeducational interventions lasting six to 10 weeks. 49 For those with ongoing disease with a prognosis of two years or more, patient-centered, monthly group support that is less rigidly structured can be effective. 49 Patients with metastatic disease benefited from either cognitive-behavioral therapy or relaxation therapy, as long as they could share their thoughts and feelings with someone who seemed genuinely interested. 50
For the survivorship period following the completion of treatment, interventions may involve additional education by the oncologist or oncology nurse with respect to increased feelings of vulnerability, adapting to limitations at home or work, and difficulty reintegrating into routine life. Ongoing problems with anxiety and reactive depression could be addressed by additional education, support groups, individual counseling or psychotherapy, or pharmacologic management by a psychiatrist. 49
Many reviews support the notion that psychosocial interventions often decrease distress and improve quality of life for the cancer population and are also cost-effective. 51 A metaanalysis of 37 controlled studies found that interventions of more than 12 weeks may be more effective than shorter ones and may help men more than women. 52 Supportive-expressive group therapy has consistently demonstrated that the expression of feelings reduced breast cancer patients’ depression. 53 Cognitive-behavioral therapy has also proven effective in treating cancer-related depression. 16 PTSD responds to medication, individual psychotherapy, group therapy, and self-help strategies. 31 Treatment guidelines have been developed by the International Society for Traumatic Stress Studies and evidence-based recommendations are available across modalities. 54, 55 A review of behavioral interventions such as hypnosis, emotive imagery, and relaxation training concluded that integrating several behavioral methods can ameliorate anxiety and distress associated with invasive medical treatments. 56
Despite all of the above evidence, one methodologically rigorous review concluded that no strong recommendations and relatively few tentative recommendations could be made about the effectiveness of psychosocial interventions for cancer patients. 57 Researchers continue to debate the value of such interventions.
WHAT WE DON’T KNOW
Future studies should address the following questions and issues:
- Does using the Distress Thermometer to screen for distress result in improved identification of patients who experience significant distress? 3 (The Problem List with Distress Thermometer should be modified to ask patients and survivors if they want help with problems.)
- Does treatment delivered in a manner consistent with NCCN recommendations result in better outcomes? 3
- Do earlier interventions have the most impact on alleviating distress and, possibly, on improving survival?
- Does targeting interventions at high-risk patients decrease distress?
- Which, if any, interventions would work with survivors whose lifestyle choices and social status may have been associated with development of disease?
- Will targeting interventions at areas such as weight reduction, physical activity, sleep hygiene, and pain decrease distress?
- How do pharmacologic and nonpharmacologic interventions compare in terms of therapeutic benefit?
- What models of intervention might be effective with patients with less education, low self-esteem, or of different cultural and ethnic backgrounds?
- What can longitudinal studies tell us about the relationship between psychological and biological factors? 22
- Will neurobiological findings allow for better understanding of psychodynamic processes and more appropriate and targeted intervention? 32
What to Ask Cancer Survivors
- How distressed are you feeling at this point on a scale of one to 10, with 10 being the worst distress that you could imagine?
- What is the biggest problem that you are experiencing?
- What might I do to help you at this point?
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