While only a minority of patients with cancer may have diagnosable PTSD, subthreshold symptoms in some patients may be debilitationg enough that clinicians should be aware of the phenomenon.
SPECIAL REPORT: PSYCHO-ONCOLOGY PART I
Although receiving a diagnosis of cancer is often colloquially referred to as traumatic, the validity and utility of the posttraumatic stress disorder (PTSD) construct in the context of malignant disease has been debated. DSM-IV-TR considered life-threatening illness as a potential traumatic stressor, inspiring a sizable literature documenting the prevalence and correlates of cancer- related PTSD.1 However, changes to the DSM-5 PTSD criteria and more enduring conceptual issues call into question the applicability of PTSD to the cancer experience.2
Prevalence estimates based on DSM-IV-TR criteria suggest that although self-reported symptoms are common, only a minority of patients with cancer meet formal diagnostic criteria for cancer-related PTSD. Across studies, more than 50% of patients with cancer meet the DSM-IV-TR stressor criteria (ie, they perceive cancer to involve a threat to their life or physical integrity), and they experience fear, helplessness, or horror. Individuals who have received a diagnosis of cancer appear to be more likely to experience PTSD than controls without a history of cancer.3 Prevalence varies according to mode of assessment, with self-report measures (eg, PTSD Checklist) yielding higher rates than structured clinical interviews (eg, SCID, CAPS).2,4 A meta-analysis by Abbey and colleagues4 found that self-report based prevalence rates ranged from 7.3% to 11.2%, depending on method for determining clinical significance. The clinical interview based prevalence was 6.4% for current PTSD and 12.6% for lifetime PTSD. Another 10% to 20% of patients may experience subsyndromal PTSD symptomology.5 The more stringent diagnostic criteria of DSM-5 have not been thoroughly evaluated in patients with cancer and may yield even lower rates.2
Other markers of distress have been linked with cancer-related PTSD. Depression, anxiety, global distress, and quality-of-life decrements have been positively associated with post-cancer trauma symptoms.6 Thus, although a small minority of patients with cancer may have diagnosable PTSD, subthreshold symptoms may be impairing and warrant clinical attention. Interestingly, a meta-analysis revealed a weak positive relationship between PTSD symptoms and posttraumatic growth in cancer patients.7,8 This is consistent with what is often seen clinically: post-cancer trauma symptoms may coexist with finding meaning, strengthened relationships, enhanced spirituality, bolstered sense of personal strength, and clearer life priorities.
Several factors appear to confer vulnerability to developing PTSD symptoms following cancer.1,4 Younger age, lower socioeconomic status, past trauma, preexisting mental health conditions, more advanced disease, more intensive treatment, peritraumatic dissociation and distress, more recent treatment completion, and poor/negative social support have been linked to greater cancer-related PTSD. These risk factors parallel known risk factors for PTSD following other traumas and suggest assessment targets in oncology (Table).
Conceptual, diagnostic, and assessment issues
Differences between cancer and stressors traditionally viewed as traumatic per DSM (eg, war/combat, physical/sexual violence, motor vehicle accident, terrorism) have been recognized. In contrast to traumas that involve threats that are sudden, external, discrete, and immediate, cancer involves threats that are slowly unfolding (eg, detection, diagnosis, treatment, adverse effects), internal (ie, cancer cells), ever-present (ie, one’s body, potential disease recurrence), and future- oriented (eg, disease progression and death).
What constitutes cessation of the traumatic stressor is unclear in cancer. Once diagnosed with cancer, one is never truly free of the threat. Even when time-limited treatments (eg, surgery, radiation, a course of chemotherapy) have been completed, maintenance chemotherapy, hormone blockade, medical surveillance and follow-up, and the realistic risk of disease recurrence make for a chronic stressor. This calls into question whether there is a post-trauma point at which to assess posttraumatic stress in patients with cancer.
Changes to the PTSD diagnostic criteria in DSM-5 raise additional questions. Although cancer would appear to meet Criterion A (the stressor criterion; directly experiencing “actual or threatened death, serious injury . . .” ), the accompanying text says that to qualify as a traumatic stressor, medical incidents or conditions must involve “sudden, catastrophic experiences (eg, waking during surgery, anaphylactic shock”). The DSM-IV-TR stipulation that a traumatic event evokes “fear, helplessness, or horror” was removed in DSM-5. Although some data suggest that cancer may meet the DSM-5 stressor criteria for a proportion of patients, data regarding the prevalence of sudden, catastrophic experiences among patients with cancer are lacking.9
Other DSM-5 PTSD diagnostic criteria must also be carefully considered in the context of cancer.
Per DSM-5, a requisite number of symptoms from 4 clusters must be present:
These symptoms must be present for more than a month, cause clinically significant distress or impairment, and not be attributable to physiological effects of a substance or medical condition.
Evaluating the presence of PTSD symptoms necessitates careful assessment of the spirit and letter of the criteria while guarding against potential pathologizing within normal limits responses to the cancer experience. For instance, worries about future disease recurrence differ from recurrent, involuntary, and intrusive distressing memories of one’s initial diagnosis, and residual conditioned nausea from chemotherapy differs from fear-related physiological reactions to reminders of cancer. Similarly, avoiding medical follow-up due to fear of receiving bad news is not technically the same as avoiding external reminders such as conversations because they arouse distressing memories and emotions about one’s past cancer experience. Recurring thoughts about a provider missing an earlier cancer diagnosis would not constitute persistent, distorted cognitions that lead to blaming others, and feeling alienated from friends who disappeared or were not supportive should not be confused with “feelings of detachment or estrangement” from others. Regular self-exam and surveillance for signs of recurrence should not be construed as hypervigilance, and persistent concentration and sleep problems may reflect late effects of chemotherapy rather than symptoms of hyperarousal. Thus, whereas patients may endorse many cancer- related PTSD symptoms on a self-report checklist, thoughtful diagnostic interviewing is needed to determine whether there really is PTSD.
Mental health assessment in patients with cancer may proceed along a continuum, from screening to specialized evaluation. The National Comprehensive Cancer Network’s (NCCN) distress screening thermometer and accompanying problem checklist can detect emotional, physical, social, spiritual, and practical concerns, and may trigger referral to a mental health practitioner.10 Self- report measures of depression (eg, Patient Health Questionnaire-9 [PHQ-9]), anxiety (eg, Generalized Anxiety Disorder 7-item [GAD-7]), and PTSD (eg, Posttraumatic Stress Disorder Checklist for DSM-5 [PCL-5]) quantify subjective symptom levels and provide clinical cutoffs; however, given the potential for false-positives in medical populations including patients with cancer, they are not a substitute for clinical interview.
With the previously noted conceptual issues in mind, structured diagnostic interviews and thorough psychosocial assessments provide more definitive information regarding differential diagnosis and context in which to understand a patient’s apparent trauma symptoms. Furthermore, such data can help determine whether their presentation would be more appropriately deemed an adjustment disorder, an exacerbation of a preexisting mood or anxiety disorder, or a rekindling of PTSD stemming from a pre-cancer trauma.1,2
A limited evidence base is available to inform treatment of cancer-related PTSD. Dimitrov and colleagues11 identified 8 published studies (including 5 randomized clinical trials) that analyzed treatment outcomes specifically for patients symptomatic for cancer-related PTSD. Significant methodological limitations (eg, small samples sizes, unclear randomization, non-blinding of participants, therapy offered to patients still undergoing active cancer treatment) limit conclusions that can be drawn from these studies. In that light, cognitive behavioral therapy (CBT; imaginal and in vivo exposure, cognitive restructuring) and eye movement desensitization and reprocessing (EMDR) showed benefit in those with elevated cancer-related PTSD symptoms. Other intervention approaches that were not specifically designed for cancer-related PTSD, including supportive-expressive group and cognitive behavioral stress management, have also shown an effect on cancer-related PTSD symptoms in RCTs.12,13
Evidence to guide psychopharmacologic treatment of cancer-related PTSD is lacking. Decisions should be informed by clinical practice guidelines for PTSD and for management of distress in patients with cancer.10,14
The following case illustrates the nuances of assessment and treatment of cancer-related PTSD.
“John” was a 51-year-old cisgender, heterosexual, Mexican American married male. He attended 2 years of college, was the father of 2 daughters, and worked in IT. He presented disease free for scheduled follow-up to his oncologist 1 year after completing radiation and chemotherapy for early-stage non-Hodgkin lymphoma. His elevated distress screen (7/10 on the NCCN thermometer, with endorsement of depression, fears, nervousness, worry, and sleep problems) triggered referral to a clinical psychologist. His scores on self-report measures of depression, anxiety, and PTSD exceeded clinical cutoffs. John reported a history of childhood physical abuse and panic disorder as a youth, which spontaneously resolved without treatment. He reported that prior to his cancer diagnosis, he was “happy and doing well at work and at home.”
However, John shared that “I’ve never been the same since my diagnosis and going through treatment.” He recalled how frightened he was when he heard the word cancer during his diagnostic interview, “I was terrified and it felt unreal—it was like I was on the ceiling of the exam room looking down at myself and the doctor.” He described frequent upsetting memories and daydream-like flashbacks (“like a movie playing over in my mind”) of his diagnosis, the severe adverse effects of treatment (nausea, pain from mucositis), and the fear and isolation from his wife and children he experienced when he was hospitalized for a life-threatening infection during chemotherapy.
John reported feeling nervous and panicky in medical settings; he avoided his children’s appointments and refused to visit family and friends in the hospital because “it brings it all back.” He tried to push thoughts, memories, and emotions about his cancer experience away and avoided conversations about cancer. He described thinking that “I can’t control anything in my life,” and persistently felt anxious and vulnerable, and felt disconnected, numb, and emotionally distanced from his wife and children. He reported feeling “wired and on edge” all the time and being irritable and “short” with others.
John expressed shame, particularly given the mental health stigma in his culture (“I should be strong—this is not normal”). He tried to keep these “crazy” reactions to himself, especially because family, friends, and health providers kept saying that he should feel fortunate, “move forward,” and focus on his future. In light of this presentation, John was given a diagnosis of cancer-related PTSD.
John’s treatment utilized components of CBT and supportive-expressive therapy. Psychoeducation provided reassurance that his reactions were consistent with those of many other trauma survivors and helped him understand the role that avoidance and negative appraisal of his reactions had in maintaining his distress. Imaginal exposure entailed having him repeatedly describe in detail the most upsetting parts of his cancer experience, including his diagnosis and frightening hospitalization; he also listened to audio recordings of these accounts several times per week.
During in vivo exposure, John visited various medical settings he had been avoiding, initially accompanied by his therapist and eventually on his own, staying in each setting (sometimes for more than an hour) until his anxiety subsided. He also had conversations he had been avoiding with family and friends about his experiences and asked them to refrain from reassuring him and to “just listen.” Cognitive restructuring helped John challenge extreme negative beliefs about himself and the world, identifying the many controllable aspects of his life. He learned and practiced self-regulation strategies to reduce tension and anxiety, including mindful breathing, imagery, and muscle relaxation.
Throughout treatment, John was able to face the reality of an uncertain future that could realistically include disease recurrence, expressed and processed his fear and sadness about the possibility of dying of his illness, and clarified his priorities, including increasing his emotional connection with his wife and children. At the conclusion of 3 months of weekly therapy, John’s symptoms were considerably reduced; he no longer met criteria for PTSD. Perhaps more importantly, John described greater experience of positive affect and appreciation of life, enhanced closeness with family and friends, and greater comfort at work and in the community.
Diagnosis and treatment of cancer may elicit PTSD in a minority of patients; subclinical symptoms are more common and are associated with reduced quality of life. Conceptual issues in applying the trauma lens to the cancer experience highlight the importance of thorough assessment and discerning differential diagnosis. Diagnosis and treatment of cancer-related PTSD should and can be informed by existing evidence-based frameworks from oncology and traumatic stress.
Dr Cordova is an Associate Professor, Department of Psychology, Palo Alto University, Palo Alto CA; Staff Psychologist, VA Northern California Health Care System. He reports no conflicts of interest concerning the subject matter of this article.
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