Post-Trauma Symptoms in Cancer Survivors

Diagnosis and treatment of cancer are potential traumatic stressors.[1,2] Others may include but are not limited to interpersonal violence, military combat, natural and man-made disasters, and displacement.[2] In response to the intense fear, helplessness, terror, and uncertainty that traumatic stressors can provoke, post-trauma symptoms (PTS) classically develop in three clusters: re-experiencing, avoidance/numbing, and hyperarousal.[2]

Table 1 highlights PTS that survivors of pediatric and adult cancer may experience. In adolescents and young adults, a sense of biological fragility and foreshortened future, narrowing interests, and living for the day are typical PTS.[3] PTS triggers-cues that recall the trauma-include sensory experiences in the clinical setting, interactions with providers, and cancer-related information.[4] Characteristic PTS can be normative self-protective responses to trauma. Psychopathology, that is, post-traumatic stress disorder (PSTD), is implied when a number of symptoms in each cluster persist beyond 1 month and cause clinically significant distress or impaired function.[2]

Lifetime prevalence of PTSD in the adult population in the US is estimated at 8%.[2] In the general population, those at higher risk for PTSD after a potentially traumatic event are adolescents and young adults[3]; females[5]; and people with previous exposure to trauma, lower levels of social support, or a family history of depression in a first-degree relative.[2]

The National Cancer Institute reports the incidence of full PTSD at 3% to 4% in early-stage patients recently diagnosed to 35% in patients evaluated after treatment. The rate of subsyndromal PTSD-like symptoms (not meeting full diagnostic criteria for PTSD) is higher, from 20% in early-stage cancer patients to 80% in people with recurrent cancer.[6]

PATIENT OVERVIEWS

Patient 1

DS is a 25-year-old white female diagnosed at age 17 with localized osteosarcoma after a 1-month history of pain in the affected limb. She was enrolled on a childhood cancer clinical trials group protocol that involved several cycles of cisplatin, methotrexate, and adriamycin; tumor resection plus allograft; and further chemotherapy with the same agents. DS completed treatment in 1 year with no significant side effects. She was initially followed by the treating oncologist for recurrence, then transferred to long-term follow-up (LTFU).

DS came to LTFU clinic alone. In the examination room, she was flushed and sweating, which she attributed to not sleeping well the previous night. Although she did not recall many details, having been rendered “out of it” by antiemetic agents, DS was noticeably short of breath when recounting the basics of her cancer experience. She was currently applying to graduate school in a health profession, having determined this career path as a result of her cancer experience.

DS identified her main sources of support as her family and her religion, especially during treatment, when her peers were busy with school and social activities. Interim medical history included revision of cancer-related surgical scars. Family history was significant for maternal depression. Current medications targeted anxiety and difficulty with concentration, neither of which predated cancer.

As part of the LTFU clinical visit, potential treatment late effects were reviewed with DS and she was informed of appointment times for echocardiography and bone mineral density assessment. She did not undergo these tests on that day and since then she has not responded to phone messages, nor has she returned to LTFU care.

Patient 2

BD is a 43-year-old male who in 2005 lost his house and community to Hurricane Katrina. After living for 6 weeks in a shelter, BD relocated to another part of the country, where he soon sought medical attention for a skin lesion on his right upper arm and was diagnosed with clinical stage III melanoma. Treatment included wide excision of tumor and therapeutic lymph node dissection, followed by interferon alpha-2b five times a week for 4 weeks.

During a follow-up visit nearly 3 years post diagnosis, BD complains of persistent pain, swelling, and loss of strength in the right arm, plus chronic fatigue. He is employed in the produce department of a grocery store that is part of a national chain. His job involves lifting heavy boxes and unloading produce, and his symptoms seriously impede his ability to do this work. BD notes that his coworkers and supervisor make nasty comments about his work that bring on intense anxiety and trigger flashbacks about Katrina and cancer, leading to feelings of guilt, fear of more losses including loss of employment and insurance, and despair. BD has not established friendships in his new community. He stays at home in the evening and uses alcohol to relax.

NURSING MANAGEMENT IN MONITORING FOR LATE EFFECTS

The first case shows how PTS can be expressed in long-term survivorship and, while these symptoms are not occurring to an extent that they meet full criteria for PTSD, they nonetheless affect the patient’s well-being, health practices, and future prospects. The case also demonstrates that monitoring for late effects requires nurses to be aware of the full range of late effects and the potential relationship between medical and psychological domains. Finally, the first case shows that perceptions of benefit in the cancer experience, referred to as post-traumatic growth, do not preclude co-existent symptoms of psychological distress including PTS/PTSD.

As seen in the first case, post-traumatic growth can include a sense of new possibilities, changed personal relationships, increased feelings of personal strength, greater appreciation of life, and deepened spirituality.[7] While the idea of personal growth in the aftermath of trauma is not a new one, it has only recently been quantified in adolescent childhood cancer survivors[8] and in adults who have been treated for malignant disease.[9–11]

Though it is required, trauma alone does not lead to posttraumatic growth; social support and opportunities to engage in conversations that aid the cognitive and emotional processing of traumatic events also seem to be necessary.[9]

The second case shows that people who have been diagnosed with cancer can have a history of trauma prior to cancer, and such a history can enhance risk for developing cancer-related PTS/PTSD. The second case also shows that alcohol use, social isolation/lack of social support, and PTS can be seen as a cluster. Conspicuously, the patient described in the second case does not show evidence of post-traumatic growth, perhaps attributable in part to negative interactions at work and a general lack of social support, including opportunities to talk with caring others about his recent traumatic experiences.

The Children’s Oncology Group LTFU Guidelines state that the potential for developing psychosocial late effects is universal in the cancer experience and recommend that all childhood cancer survivors receive annual psychosocial assessment with particular attention to PTSD, anxiety, and depression.[12] Given reports in the literature about PTS as a response to adult cancer,[9–11,13–15] adult survivors of adult cancer could also benefit from this type of psychosocial assessment.

Advanced practice and clinical nurses can start to address PTS by providing anticipatory guidance and educational materials to survivors and to their specialty and primary care providers about cancer-related PTS/PTSD, the normative role of characteristic symptoms, and how they can also be detrimental. Psychosocial assessment of survivors can be conducted via telephone or self-report online prior to the LTFU clinical visit and should include screening for cancer-related PTS/PTSD with a PTSD-specific screening tool like the 4-item Primary Care PTSD (PC-PTSD)[16] or a tool that can also screen for the common PTSD comorbidities of anxiety and depression, for example, the 7-item Beck Anxiety Inventory–Primary Care (BAI-PC).[17]

Given the possibility of multiple traumatic stressors over the course of a lifetime, cancer survivors might also be screened for having experienced other potential traumatic stressors such as rape, domestic violence, or child abuse that could reignite or increase cancer-related PTS. After traumatic events, people can increase their use of alcohol. Both alcohol and PTSD have been associated with increased risks for health problems,[18] and these risks can be heightened by cancer treatment exposures. Complete psychosocial assessment of childhood and adult cancer would include asking about the use of alcohol and substances.

Survivors whose screening results are of concern can be scheduled in advance to meet with a mental health professional during the LTFU clinical visit for further evaluation and follow-up as clinically indicated. When a mental health professional is not available in the LTFU clinical setting, referrals should be made.

If screening prior to the clinic visit is not feasible, self-report psychosocial assessments can be completed in the waiting room or advanced practice nurses and clinical nurses can perform in-person screening during the clinical visit, with referral as indicated. Nurses can also note PTS such as physiological reactivity (sweating; rapid heart rate; shortness of breath; complaints of nausea, lightheadedness, or dizziness) during interactions with survivors.

Finally, psychoassessments should not focus solely on adverse outcomes. Advanced practice and clinical nurses may well inquire about a survivor’s life in general, including current activities and plans for the future, as this affords opportunities for discussing the good that may derive from or simply follow cancer without coercing survivors to present as excessively upbeat or cheery if that is not how they feel.

DISCUSSION

The application of PTSD to patients with cancer began in 1994 with the American Psychiatric Association’s redefinition of the trauma criteria in the DSM (Diagnostic and Statistical Manual of Mental Disorders)-IV to include life-threatening illness.

Both childhood and adult cancer survivors are at risk for developing PTS/PTSD. Patients with PTSD often have experienced violent traumas and anxiety disorders predating cancer, compared with survivors with subsyndromal cases.[13,14,19] While all childhood cancer survivors are at risk for developing PTS/PSTD, young adult survivors have been shown to be at higher risk than child and adolescent survivors.

In one study of childhood cancer survivors aged 18–40 years, 20.5% of the participants meet full diagnostic criteria for PTSD on structured clinical interview by a trained professional. On a standardized measure of PTS, 32% had a total score in the moderate-to-severe range. Further, young adult total scores were significantly higher (P < .01) than total scores for youth aged 8–18 years in a previous study by the same researchers. On the avoidance subscale of a second measure of PTS, 16.5% of young adult participants scored in the clinically significant range.[20]

The factors that place young adults at risk can be explained in part by what we understand about human development. Young adults and adults have mature conceptions of death that recognize its finality and, increasingly through experiences in their social networks, its universality. Usually they have achieved a level of cognitive development that allows them to understand cancer as an illness that has posed and continues to pose threats to their personal existence and the life they envision.

Children and adolescents with cancer are routinely given developmentally appropriate information about their illness situation. Unless increasingly sophisticated information is regularly provided as youth who have been diagnosed with cancer mature, their original illness understandings can be preserved. Not atypically it is during an LTFU clinical visit that young adult survivors really comprehend the chronic nature of childhood cancer and how its actual or potential late effects can practically affect key achievements of young adulthood, including embarking on a career and forming a family, as well as their future functioning and quality of life.

Because they can comprehend the nature of cancer at diagnosis and going forward, survivors of adult cancer would also seem to be at higher risk for developing PTS/PTSD than are child and adolescent survivors of childhood cancer.

In a study of women’s responses to breast cancer at a mean of 2.5 years post-treatment, one-third of the participants reported physiological reactivity and 5% to 10% met full diagnostic criteria for cancer-related PTSD. Cognitive avoidance, emotional reactivity, hypervigilance, disturbed sleep, and difficulty concentrating were also common among study participants. Lower scores on the measure of PTSD were associated with higher levels of social support and less extensive prior trauma history. While scores on the measure of PTSD were stable at 1 year follow-up, women who met full criteria for PTSD based on the first interview were less likely to complete the second interview than the women who did not meet these criteria.[9]

A study of more than 700 long-term breast cancer survivors from a population-based German cancer registry showed that nearly 40% had moderate to high anxiety, and 12% had PTSD. The women were surveyed an average of 4 years post diagnosis, and assessed by several self-report tools (Hospital Anxiety and Depression Scale, Post-traumatic Stress Disorder Checklist–Civilian Version, and Short-Form Health Survey). Time since diagnosis had no sigificant impact on psychological comorbidity and quality of life.[14]

Nearly half of these women felt they were not well enough informed about support resources, and women who reported distress and support needs were older, less educated, and less informed (P < .05). The investigators concluded that not only is the long-term psychological impact of breast cancer evident, but there is also a need for psychosocial screening of patients and implemetation of interventions tailored for older women.

In a US study assessing 153 early stage breast cancer survivors 20 years after adjuvant chemotherapy, 15% reported two or more moderately to extremely bothersome PTSD symptoms and 1% to 6% reported nausea, emesis, and distress resulting from sights, smells, and tastes that triggered reminders of their treatment. Similar to findings by other investigators, PTSD symptoms were worse in survivors with lower levels of education, less adequate social support, more severe negative life events, and greater dissatisfaction with their medical care.[21]

In a cancer registry study of nearly 900 non-Hodgkins’s lymphoma (NHL) patients aged 25 to 92 years old and 2 to 44 years postdiagnosis, modifiable risk factors independently associated with PTSD included less social support, negative appraisals of treatment intensity, and more employment and insurance issues compared with survivors who did not have PTSD.[15]

A central task of adolescence/young adulthood is developing independence, including in health self-management. As a result, young adult survivors of pediatric and adult cancers, like adult survivors, can arrive alone at LTFU clinical visits. Most people, however, can feel unsettled by the LTFU experience regardless of their age, especially by information about potential late effects, and so could benefit from the supportive presence of a family member or friend in the waiting room, as well as on the journey to and from clinic.

Nurses can recommend that young adult and adult survivors ask someone to escort them to LTFU while also strongly encouraging independence and privacy during the clinical visit. Survivors who have substantial cognitive impairments may not be fully independent in providing medical history and recalling health education but still deserve privacy during physical examination.

CONCLUSION

Recurring psychosocial assessment of all young adult survivors of childhood cancer and, it seems to follow logically, young adult and adult survivors of adult cancer-with particular attention to PTS/PTSD as well as the factors that can increase risk for PTS/PTSD and inhibit post-traumatic growth-is good nursing practice. As M. Tish Knobf emphasized following a review of factors influencing psychosocial responses and quality of life in breast cancer survivors, psychosocial interventions “should be targeted to meet informational needs, promote effective communication, manage uncertainty, control symptoms, enhance social and emotional support, and address cultural differences.”[22]

References:

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