Posttraumatic Stress and the Experience of Cancer: A Literature Review.

In recent years there has emerged a new direction in research into posttraumatic stress that incorporates the acute stress associated with the diagnosis and treatment of cancer. This area of research has important implications for the future direction of rehabilitative care for cancer patients as it highlights the severe adjustment difficulties experienced by many of those undergoing cancer treatments and in the families who nurture them. There is an urgent need for intervention strategies designed to identify the vulnerable in these groups and provide them with appropriate rehabilitative counselling and support. This article is written to demarcate and consolidate this innovative direction in psycho-oncology and make the relevant literature readily available for health and allied health professionals involved in the rehabilitation of post-diagnosis cancer patients.

To date, a vast body of literature has been developed that explores the individual's response to acute stress (Breznitz & Goldberger, 1993). According to Baum (1990), it is not possible for anyone to read or master this entire body of work; 1,000 or more articles on this topic are published in biological and behavioral science journals each year. Exciting new developments in relation to posttraumatic stress disorder (PTSD) and the experience of cancer which are emerging from this body of research are at risk of being lost in the plethora of research on stress. This article is written to demarcate and consolidate this innovative direction in psycho-oncology, and to make the relevant literature readily available for health and allied health professionals involved in the rehabilitation of post-diagnosis cancer patients. An assumption underlying this discussion is that psychosocial support is integral for the rehabilitation of cancer patients.

In the 1980's the concept of posttraumatic stress disorder (PTSD) was developed for the Diagnostic and Statistical Manual of Mental Disorders (DSM-III) (American Psychiatric Association, 1980) to accommodate the diagnosis of acute stress symptomatology associated with "a recognizable stressor that would evoke symptoms of significant distress in almost everyone." PTSD was characterized by three categories of symptoms (Shalev, Schrieiber, Galai et al., 1993), including repeatedly reliving the traumatic event; avoidance of cues reminding the patient of the event with a numbing of general responsiveness; and a state of increased arousal.

The importance of the DSM-III criterion is that this was the first time a psychiatric classification had an external referent as causative factor for the disorder, i.e. acute stressor, rather than focusing on inter/intra psychic factors. Research on posttraumatic stress has, however, mainly been restricted to understanding the impact of obvious traumatic stressors such as natural disasters (Green, Lindy, Grace et al., 1992; Shore, Tatum & Vollmer, 1986), as well as human-created traumas such as sexual abuse (Roth & Lebowitz, 1988), being a refugee (Kroll, Habenight, Mackenzie et al., 1990), torture (Reid, Silove & Tam, 1990), war service (Butler, Braff, Rausch et al., 1990), and nuclear accidents (Bromet, Schulberg & Dunn, 1982). The current discussion will consolidate a new direction in PTSD research by reviewing the literature on the emerging area of acute stress associated with the diagnosis and treatment of cancer. This area of research has important implications for the future direction of rehabilitative care for cancer patients because it highlights the severe adjustment difficulties experienced by many of those undergoing cancer treatments, as well as the caregivers and families who nurture them. There is an urgent need for intervention strategies designed to identify vulnerable individuals in these groups and provide them with appropriate counseling and support.

Although the reader of research on PTSD can easily be overwhelmed by repetition within the body of literature, it is equally easy to see great progress being made in understanding important issues associated with diagnosis, vulnerability, and treatment. PTSD is now recognized as an important public health concern because of the devastating and debilitating consequences of its symptomatology, and the increasing awareness of the widespread incidence of these symptoms in disparate populations of sufferers (Figley, 1986; Hamner, 1994). The significance of this issue becomes more pronounced when associated with cancer, one of society's leading health-related causes of morbidity and mortality. As Sporn (1996) explains, although there have been specific triumphs, common carcinomas continue to be a major cause of death and suffering, particularly in adults. Paralleling the high incidence of cancer has been an improved success rate in treating many cancers (e.g. the leukemias) with the consequence that not only are a significant number of individuals exposed to the impact of the diagnosis and treatment but also an increasing number must learn to adjust to the many psychological and interpersonal challenges of survivorship (Lesko, 1990). The theoretical framework provided by PTSD is already making a contribution to developing insights that will contribute to the supportive care of those patients and their families, both during and after cancer treatments (Baider & DeNour, 1997; Cella, Mahon, & Donovan, 1990; Cordova, Andrykowski, Kenady et al., 1995; Kazak, Barakat, Meeske, et al., 1997; Kazak, Stuber, Barakat et al., 1998; Lesko, 1990). Important changes to the APA's DSM criteria paved the way for the quantum leap that acknowledged serious and chronic illness, including cancer, as stressors capable of eliciting PTSD symptomatology.

The DSM-IV Classification

The notion of chronic illness as a stressor was not included in the DSM-III-R criteria for PTSD (Alter, Pelcovitz, Axelrod et al., 1996). However, in 1994, DSM-IV (4th ed.: DSM-IV; American Psychiatric Association, 1994) criteria for the diagnosis of PTSD was revised to include "being diagnosed with a life-threatening illnes" as meeting the requirement for "exposure to an extreme traumatic stessor". The DSM-IV criteria no longer included the phrase "outside the range of normal human experience," but substituted instead the notions of "actual or threatened death or serious injury or a threat to one's physical integrity, or witnessing an event that involves death, injury, or a threat to the physical integrity of another person; or learning about unexpected or violent death, serious harm, or threat of death or injury experienced by a family member or other close associate" (APA, 1994). Such definitions allowed the inclusion in research of both cancer patients and their family or caregivers. As Talbert and associates point out (1995), this new stressor definition incorporates a more subjective understanding of trauma associated with threat to physical integrity, including perceptions of fear, helplessness, and horror, and hence allows the inclusion of stressors experienced in primary care medicine. This led the way to the seminal work on PTSD and cancer that is detailed in this article.

Field trials were carded out on the new DSM-IV criteria (Alter et al., 1996; Pelcovitz, Goldenberg, Kaplan et al., 1996) to provide systematic assessment of the presence of PTSD in newly recognized target groups in oncology. The trials affirmed the appropriateness of changes in the DSM-IV criteria that allow for inclusion of chronic illness as an eligible stressor for PTSD (Alter et al., 1996). The studies that followed affirmed this trend and the present indications are, as Baider and DeNour (1997, p.346) clearly state, that for cancer patients' "a new theoretical framework (has emerged) in which the concept of psychiatric morbidity in patients should be understood within the context of PTSD."

The Beginning to a New Direction As Cordova and associates (1995) point out, the literature on PTSD in survivors of life-threatening illness is sparse and includes work on burn patients (Powers, Cruse, Daniels et al., 1994) and individuals experiencing cardiac events such as myocardial infarction, heart catheterisation, or coronary artery bypass surgery (Doerfler, Pbert & De Cosmo, 1994; Kutz, Shabtai, Solomon et al., 1994).

There is also a small but growing body of work on PTSD symptomatology and the experience of cancer. The majority of this work (61%), which is represented diagrammatically in Figure 1, has only been completed in the last four years, and of that research most (81.8%) has been completed in the last two years. Although very recent and scant, this body of research is already making a substantial contribution to enriching our understanding of the immediate and long-term psychological sequelae of receiving a diagnosis of, treatment for, and survival after cancer. Participants in the research include samples from pediatrics, adult patients, caregivers, survivors, and parent groups (Stuber, Kazak, Meeske et al., 1997).

Figure 1
List of Findings Involving Prevalence of PTSD in Cancer Populations

Author(s)                   Date               Diagnosis

Alter et al.,               1996         General DSM-IV (trial)
                                         SCID
Baider & DeNour             1997         Breast DSM-IV
                                         IES
Butler et al.,              1996         Pediatric DSM-IV
                                                   DSS
Cella et al.,               1990         General DSM-III
                                         (Cytotoxics)
Cordova et al.,             1995         Breast DSM-IV
Jacobsen et al.,            1998         Breast DSM-IV
                                         IES
Kaasa et al.,               1993         General DSM-III
                                         (Radiotherapy) IES
Kazak et al.,               1997         Pediatric DSM-IV
                                         Leukemia (IES)
                                         Parents
Kornblith et al.,           1992         Hodgkins DSM-III
                                         Disease
Lesko(*)                    1990         Hematology DSM-III
                                                    IES
Pelcovitz & Kaplan(#)       1994         General DSM-IV
                                                 (Adolescents)
Pelcovitz et al.,           1996         Pediatric DSM-IV (trial)
                                         (mothers) PSEI
                                                   SCID
                                                   DIS
Pot-Mees                    1989         Pediatric DSM-III
                                         (BMT)

Nir                         1985         Pediatric DSM-III

Stuber et al.,              1991         Pediatric DSM-III
                                         (BMT) (Reaction
                                                Index)
Stuber et al.,              1996         Pediatric DSM-IV
                                         & Parents (Reaction
                                         Leukemia Index)
Stuber et al.,              1997         Pediatric DSM-IV
                                                   (Reaction
                                                   Index)
Tjemsland et al.,           1996a        Breast DSM-IV
                                         (Diagnosis) IES
(Avoidance)
Tjemsland et al.,           1996b        Breast DSM-III
                                         (Post Surgery) IES

Author(s)              CriteriaPercent

Alter et al.,           4% (current)
                       22% (lifetime)
Baider & DeNour        30% (Intrusion)

Butler et al.,         21%

Cella et al.,          43% (intrusion)
                       80% (avoidance)
Cordova et al.,         5-10%
Jacobsen et al.,       12-19%

Kaasa et al.,          33.30%

Kazak et al.,          10.2% (mothers)
                        9.8% (fathers)

Kornblith et al.,      Comparative

Lesko(*)               Comparative

Pelcovitz &
 Kaplan(#)             33%(lifetime)

Pelcovitz et al.,      54%

Pot-Mees               Clinical
                       Observation
                       Evidence
Nir                    Clinical
                       Observation
                       Evidence
Stuber et al.,         100% (mild to
                       symptomatic)

Stuber et al.,         12.5%(survivors)
                       39.7% (mothers)
                       33.3% (fathers)
Stuber et al.,         14.7%

Tjemsland et al.,      44% (Intrusion)
                       29%
(Avoidance)
Tjemsland et al.,      18% (Intrusion)
                       14% (Avoidance)

Note: (*) Lesko (1990) assessed illness related stress with IES with no mention of DSM criteria, or percentage of sample with PTSD. (#) Unpublished results (Paper presented at the annual meeting of the International Society for Traumatic Stress Studies, Los Angeles, CA).

The preliminary work on PTSD and cancer provides information on -

* the prevalence of PTSD symptomatology in varied oncology diagnostic groups,

* some insights into the myriad of individuals other than the patient who are affected,

* the factors that indicate individuals who are vulnerable to PTSD, and

* the need for follow-up support.

The focus of this article will remain exclusively on the findings related to the specific PTSD research in the area of cancer. No attempt will be made to systematically include the enormous body of research that exists on the wide range of non-cancer trauma issues. Such material will only be included where it directly informs the research in psychosocial oncology.

The Prevalence of PTSD Symptomatology in Cancer Populations

The omission of cancer as a suitable qualifier for trauma from the PTSD nosology is not the only significant reason for the absence of data on the prevalence of acute stress symptomatology in cancer populations. Previous studies on the psychological sequelae of cancer have focused almost exclusively on documenting affective distress such as anxiety, anger, or depression (Tjemsland, Soreide, & Malt, 1996a) to the exclusion of acute or long-term stress reactions. The instrumentation used for such a focus can mask or obscure indications of such stress. As Wintgens and associates (1997) suggest, this is particularly so in pediatric oncology where disorganized and agitated behaviors common in distressed hospitalized children can easily be dismissed as normal reactions with little cognizance given to the severity of the underlying stress reaction. Other researchers (Kazak, Meeske, Penati et al., 1997; Stuber, Christakis, Houskamp et al., 1996) concur with this by pointing out that the unfortunate use of standard general measures of anxiety and depression have been blocks to documenting the distinctive and long-term psychological impact of childhood cancer. It took Pot-Mees's landmark study (1989) that specifically applied PTSD to the trauma of bone marrow transplantation to initiate this new direction in research. The DSM-IV criteria of serious illness as a qualifying event consolidated that direction (Kazak et al., 1997).

A similar pattern can be seen in the assessment of adult functioning. As noted by Pelcovitz and associates (1996) when discussing the systematic investigation of parental functioning of pediatric cancer survivors, psychological measures have almost exclusively included those that do NOT include assessment of stress related to the illness. Such measures include self-report of general psychological symptomatology, medical staff ratings, or structured clinical interviews which are all not specifically designed to record stress reactions.

Added to the difficulties associated with masking the prevalence of stress reaction is the complication of under-reporting even when the focus is appropriately on recording stress. The findings of many of the studies reported in this review are qualified by statements that allude to the possibility that the prevalence of PTSD is significantly underestimated. Reasons given for this under-reporting center on the very nature of PTSD symptomatology. Refusal to participate in the studies are largely from those who refuse to talk about the trauma, which can be interpreted as an indication of avoidance or undiagnosed PTSD (Kazak et al., 1997; Pelcovitz et al., 1996; Stuber et al., 1996). As Pelcovitz and associates (1996) explain, "it is conceivable that those who refuse to participate were more at risk for this disorder." The concern is that those who do not participate may include some of the most symptomatic individuals (Stuber et al., 1996).

Figure 1 alphabetically lists the prevalence findings from studies with a specific focus on PTSD associated with the experience of cancer. These studies included a wide range of diagnostic groups (e.g. breast cancer and leukemia), different modalities (e.g. radiation and chemotherapy), stages of treatment (e.g. point of diagnosis, treatment and post-treatment), pediatric and adult patients, as well as parents. The findings need to be placed in the context of a 1% incidence in the general population of PTSD (Kazak et al., 1997; Stuber et al., 1996) and a 3-58% incidence for individuals in "at risk" populations (Kazak et al., 1997). The prevalence of PTSD in medical patients is as yet unknown (Shalev et al., 1993). The early indications from these studies are that PTSD symptomology is a significant concern in cancer populations.

The Vulnerability Factor

A considerable amount of work has been completed concerning factors that increase an individual's vulnerability to developing PTSD symptomatology. However, as the etiology of PTSD specifically concerns factors associated with external stressors, one must attend to the specific factors associated with the diagnosis and treatment of cancer when studying PTSD in oncology. The hope is that the development of this area of research will proceed effectively by the process of isolating and eliminating factors not associated with vulnerability whilst detailing those that are. Unfortunately, however, as the following discussion will demonstrate, this linear hope of progression is filled with contradiction and inconsistency.

Figure 2 begins the discussion by providing an overview of factors (alphabetically listed by author) found to indicate vulnerability to PTSD in studies specifically designed to target samples of cancer populations.

Figure 2
Factors Positively Associated with PTSD in Relation to Cancer

Author                    Diagnostic Group   Target Group

Alter et al., 1996        Breast             Women
                          Other Cancers

Butler et al., 1996       General            Pediatric

Cordova et al., 1995      Breast

Cella et al., 1990        General

Jacobsen et al., 1998     Breast             Adult

Kazak et al., 1997        Leukemia           Pediatric

Kazak et al., 1998        Leukemia           Parents
                          Lymphoma
                          Sarcomas

Lesko, 1990               Haematology        Adolescents

Pelcovitz et al., 1996    Mixed cancers      Mothers

Pelcovitz et al., 1998    Leukemia           Adolescent
                          Lymphoma

Stuber et al., 1991       Leukemia           Pediatric
                          Neuroblastoma

Stuber et al., 1996       Leukemia           Pediatric &
                          Wilms's Tumor      Parents
                          Sarcomas
                          Lymphomas

Stuber et al., 1997       Leukemia           Pediatric
                          Wilms's Tumor
                          Sarcomas
                          Lymphomas

Tjemsland et al.,         Breast             Adult Female
1996a

Tjemsland et al.,         Breast             Adult Female
1996b

Author                    Factors Associated with PTSD

Alter et al., 1996        * A previous history of PTSD
                          * Prior Trauma *
                          * Other Major Life Stressors(*)

Butler et al., 1996       * Presently on treatment
                          * Preparing for BMT
                          * Not having received cranial
                            Irradiation

Cordova et al., 1995      * Age (Younger women are at risk)

Cella et al., 1990        * Recurrence of Disease

Jacobsen et al., 1998     * Less well educated
                          * Longer stays in hospital
                          * More advanced disease
                          * Poor physical health
                          * Poor sleep

Kazak et al., 1997        * Higher levels of parent social
                            support was associated with
                            more
                          * Avoidance in children

Kazak et al., 1998        * Trait anxiety
                          * Perception of whether child would die
                          * Peceived intensity of child's treatment
                          * Social support associated with
                            fewer symptoms

Lesko, 1990               * Extensive hospitalization
                          * Young women
                          * Recently off treatment

Pelcovitz et al., 1996    * More prediagnosis high magnitude
                            life events

Pelcovitz et al., 1998    * Viewed family as chaotic
                          * More likely to have mothers with PTSD

Stuber et al., 1991       * Perceived rather than objective
                            life threat

Stuber et al., 1996       * Older age of child as maturing
                            cognitive ability increases
                            notion of cancer as threat
                          * Distressing medical procedures
                            (Bone marrow aspirates;
                            Spinal taps).

Stuber et al., 1997       * Life appraisal (How `hard or scary'
                            is having cancer)
                          * Child's level of anxiety
                          * History of other stressful experiences
                          * Gender (female)
                          * Family & social support
                          * Decreases since time of treatment

Tjemsland et al.,         * Age (younger)
1996a                     * Being married
                          * Serious illness, accident or
                            hospitalization in last year

Tjemsland et al.,         * Sociodemographic factors
1996b                     * Premorbid Health Problems
                          * Negative Life Events
                          * Clinical - Oncology parameters

The contradictions in the present research becomes obvious if these findings are compared with Figure 3, which details factors that are not related to vulnerability to PTSD in oncology. Points of contention arise around such factors as age, marital status, family support, issues associated with severity of illness and treatment, and previous physical and mental health history.

Figure 3
Factors Not Found to be Associated with PTSD

Author                      Diagnostic Group

Alter et al., 1996          Cancer General

Cella et al., 1990          Cancer General
                            (Cytotoxic treatment)

Cordova et al., 1995        Breast Cancer

Kazak et al., 1997          Pediatric
                            Leukemia
                            Parents

Pelcovitz et al., 1996      Pediatric
                            Mothers

Stuber et al., 1997         Pediatric

Tjemsland et al.,           Breast Cancer
1996a

Tjemsland et al.,           Breast Cancer
1996b

Author                      Factor

Alter et al., 1996          * Severity of disease

Cella et al., 1990          * Age
                            * Marital Status
                            * Clinical Data (ie. Time
                              since diagnosis; Extent of
                              Recurrence)

Cordova et al., 1995        * More Advanced Disease
                            * More Extensive and
                              Aggressive Treatment

Kazak et al., 1997          * Current Age of Child
                            * Age at Diagnosis
                            * Months Off Treatment

Pelcovitz et al., 1996      * Illness Severity
                            * Family and Extrafamilial
                              Support

Stuber et al., 1997         * Mothers Perception of
                              Treatment

Tjemsland et al.,           * Previous Physical and
1996a                         Psychiatric Parameters

Tjemsland et al.,           * Age
1996b                       * Marital Status
                            * Stage of Disease
                            * Type of Surgery
                            * Adjuvant Cytotoxic
                              Treatment

To further complicate the picture, some authors (Butler, Rizzi & Handwerger, 1996; Lesko, 1990) found two of the controversial factors (family cohesion and support) to be positive factors contributing to the prevention of PTSD symptomatology.

It is also important to note that in many ways these findings offer some challenge to the very notion of etiology in PTSD symptomatology. As Healy (1993) points out, PTSD is the first diagnosis to be wholly environmentally determined. Consequently, factors such as severity of illness, recurrence of disease, clinical data, and time since treatment, should by inference surface as important causative variables. It is early in the evolution of this research and there is sufficient contradiction to prevent any firm judgment being made.

Perhaps the most important findings arising from the reviewed research concerns the importance of the subjective experience of trauma. As Stuber and associates (1997) observe, the best predictors of PTSD symptomatology may be subjective indicators.

By combining the insights of research, my experience counselling families experiencing PTSD in oncology, and the preliminary results of my research on the topic, I would suggest practitioners should be vigilant of the possibility of PTSD with patients or caregivers who have some of the following situations.

* Lack of social support

* Have experienced a succession of traumatic events such as significant loss or grief

* Do not have the buffer of material and financial comfort

* Experience severe symptoms, difficult treatments or strong side effects from treatment

* Have recurrence of the disease

* Have a prolonged hospitalization

* Have a previous history of PTSD in the family

* Are experiencing major difficulties in their life other than the illness

* Are younger age during diagnosis and treatment

* Demonstrate an anxious personality

* Perceive their life to be very difficult and unsatisfying

Need for Intervention and Treatment

Work in this area is already demonstrating the unrecognized and still potentially under-reported incidence of individuals coping with disabling psychological sequelae associated with their cancer experience. If the invasive, intense, and life-threatening procedures associated with cancer, such as bone marrow transplants, are taken into consideration, then the need for supportive intervention becomes obvious. This need is exacerbated today, not only due to the rising incidence of cancer, but because of advances in treatments, that increase the number of patients who face the challenges of survivorship (Wintgens, Boileau & Bobacy, 1997). Kazak and associates suggest (1997) psychological interventions are needed during and after cancer treatments. Often patients or their caregivers will not exhibit symptomatology until after the ordeal is over (Alter et al., 1996). Unfortunately, as Shalev and associates (1993) explain, such symptomatology is associated with poor recovery and a tendency to avoid further medical treatment. Such patients are highly unlikely to seek counseling support because of their need to avoid contexts associated with trauma. Creative solutions are required pre- as well as post-treatment. A great deal of further investigation is necessary to establish not only the most effective means of intervention for patients, but to devise strategies for evaluating and supporting their families and caregivers.

Conclusion

Understanding cancer patients and their families' response to trauma through the new theoretical lens of PTSD symptomology provides a promising therapeutic framework for developing positive psychosocial interventions in supportive care in oncology. We are beginning to document the prevalence of such symptomatology, although a great deal of work is necessary to effectively map issues of vulnerability and appropriate intervention strategies. At present the assumption is increasingly being validated that many patients will share a common response to cancer that includes painful aspects of intrusion, avoidance, numbness, and hyper-arousal. This article has brought together the somewhat sparse but focused research that is emerging in this exciting new area to acknowledge the long-term and disabling experience that goes with PTSD symptomatology in oncology. The hope and expectation is that as research in the area of PTSD and cancer evolves, insights will be made available so that afflicted individuals can be reached with the normalizing message that such a reaction to trauma is not pathology but an expected and potentially remediable aspect of their cancer experience.

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Pam McGrath Queensland University of Technology

Pam McGrath, M.A., Ph.D, Research Fellow, Centre for Public Research, Queensland University of Technology, Kelvin Grove, Victoria Park Road, Red Hill, QLD 4059, Australia Email: [e-mail]3