| 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).
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).
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.
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.
References
Alter, C., Pelcovitz, D., Axelrod, A., Goldenberg,
B., (1996) Identification of PTSD in Cancer Survivors,
Psychosomatics, 37 (2), 137-43.
American Psychiatric Association (1980) Diagnostic
& Statistical Manual of Mental Disorders, 3rd
Edition, American Psychiatric Association, Washington
D.C.
American Psychiatric Association (1994) Diagnostic
and Statistical Manual of Mental Disorders, 4th
Edition, American Psychiatric Association, Washington,
DC.
Baider, L. & DeNour, A., (1997) Psychological
Distress and Intrusive Thoughts in Cancer, Journal
of Nervous and Mental Disease, 185(5), 346-348.
Baum, A., (1990) Stress, Intrusive Imagery, and
Chronic Distress, Health Psychology, 9(6), 653-75.
Bornstein, M. & Genevro, J., (1996) Child Development
and Behavioral Pediatrics. Lawrence Erlbaum Associaties,
Pub., Mahwah, New Jersey.
Breznitz, S. & Goldberger, L., (1993) Stress
Research at a Crossroads, in Handbook of Stress.
Theoretical & Clinical Aspects Goldberger, L.,
& Breznitz, S., (eds.), The Free Press, New
York.
Bromet, E., Schulberg, H. & Dunn, L., (1982)
Reactions of Psychiatric Patients to the Three Mile
Island Nuclear Accident, Archives of General Psychiatry,
39, 725-730.
Butler, R., Braff, D., L., Rausch, J., Jenkins,
M., Sprocke, J. & Geyer, M., (1990) Physiological
Evidence of Exaggerated Startle Responses in a Subgroup
of Vietnam Veterans and Combat-Related PTSD, American
Journal of Psychiatry, 147, 1308-1312.
Butler, R., Rizzi, L. & Handwerger, B., (1996)
Brief Report: The Assessment of Posttraumatic Stress
Disorder in Pediatric Cancer Patients and Survivors,
Journal of Pediatric Psychology, 21 (4), 499-504.
Cella, D., Mahon, S., Donovan, M., (1990) Cancer
Recurrence as a Traumatic Event, Behavioural Medicine,
16, 15-22.
Cordova, M., Andrykowski, M., Kenady, D., McGrath,
P., & Sloan, D., (1995) Frequency and Correlates
of Posttraumatic Stress - Disorder - Like Symptoms
After Treatment for Breast Cancer, Journal of Consulting
and Clinical Psychology, 63(6), 981-986.
Doerfler, L., Pbert, L. & De Cosmo, D., (1994)
Symptoms of Posttraumatic Stress disorder Following
Myocardial Infarction & Coronory Artery Bypass
Surgery, General Hospital Psychiatry, 16, 193-99.
Figley, C., (ed.), (1986) Trauma and Its Wake.
Brunner/Mazel, New York.
Green, B., Lindy, J., Grace, M., Leonard, A., (1992)
Chronic Posttraumatic Stress Disorder and Diagnostic
Comorbidity in a Disaster Sample, Journal of Nervous
Diseases. 180, 760-766.
Hamner, M., (1994) Exacerbation of Posttraumatic
Stress Disorder Symptoms with Medical Illness, General
Hospital Psychiatry, 16, 135-37.
Healy, D., (1993) Images of Trauma, From Hysteria
to Post-Traumatic Stress Disorder, Faber and Faber,
London.
Jacobsen, P., Widows, M., Hann, D., Androykowski,
M., Kronish, L. & Fields, K., (1998) Posttraumatic
Stress Disorder Symptoms After Bone Marrow Transplantation
for Breast Cancer, Psychosomatic Medicine, 60, 366-371.
Kaasa, S., Malt, U., Hagen, S., et al., (1993)
Psychological Distress in Cancer Patients with Advanced
Disease, Radiotherapy and Oncology, 27, 193-197.
Kazak, A., Baraka, L., Meeske, K., Christakis,
D., Meadows, A., Casey, R., Penati, B., Stuber,
M., (1997) Posttraumatic Stress, Family Functioning,
and Social Support in Survivors of Childhood Leukemia
and Their Mothers and Fathers, Journal of Consulting
and Clinical Psychology, 65(1), 120-9.
Kazak, A., Stuber, M., Barakat, L., Meeske, K.,
Guthrie, D & Meadows, A., (1998) Predicting
Posttraumatic Stress Symptoms in Mothers and Fathers
of Survivors of Childhood Cancers, Journal of American
Academy Child & Adolescent Psychiatry, 37 (8),
823-30.
Kornblith, A., Anderson, J., Cella, D., et al.,
(1992) Hodgkin's Disease Survivors at Increased
Risk for Problems in Psychosocial Adaptation, Cancer,
70, 2214-2224.
Kurtz, I., Shabtai, H., Solomon, Z., Newmann, M.
& David, D., (1994) Posttraumatic Stress Disorder
in Myocardial Infarction patients, Prevalence Study,
Israeli Journal of Psychiatry & Related Science,
31, 48-56.
Kroll, J., Habenight, M. Mackenzie, T., Yang, M.,
Chan, S., Nguyen, T., Ly, M., Phomnasouvanlu, B.,
Nguyen, H., Vang, Y., Souvannasoth, L. & Cabugoa,
R., (1990) Depression and Posttraumatic Stress Disorder
in South-East Asian Refugees, American Journal of
Psychiatry, 146, 1592-97.
Lesko, L., (1990) Surviving Hematological Malignancies,
Stress Responses and Predicting Psychological Adjustment,
Progress in Clinical and Biological Research, 352,
432-437. Nit, Y., (1987) Posttraumatic Stress Disorder
in Children with Cancer, in Children and Death.
Schowalter, J., Buschman, P., Patterson, P., Kutscher,
A., Tallmert, M., Stevenson, R., (eds.), Prager,
New York.
Pelcovitz, K., Kaplan, S., (1992) Disorders of
Extreme Stress & PTSD in Cancer Survivors, Paper
presented at the Annual Meeting of the International
Society for Traumatic Stress Studies, Los Angeles,
CA.
Pelcovitz, D., Goldenberg, B., Kaplan, S., Weinblatt,
M., (1996) Posttraumatic Stress Disorder in Mothers
of Pediatric Cancer Survivors, Psychosomatics, 37(2),
116-26.
Pot-Mees, c., (1989) The Psychosocial Effects of
Bone Marrow Transplantation in Children. Eubron
Delft, The Netherlands.
Powers, P., Cruse, C., Daniels, S. & Stevens,
B., (1994) Posttraumatic Stress Disorder in Patients
with Bums, Journal of Bum Care Rehabilitation, 15,
147-153.
Reid, J., Silove, O., Taru, R., (1990) The Development
of the NSW Service for the Treatment and Rehabilitation
of Torture and Trauma Survivors (STARTTS), The First
Year, Australian and New Zealand Journal of Psychiatry,
24, 486-495.
Roth, S. & Lebowitz, L., (1988) The Experience
of Sexual Trauma, Journal of Traumatic Stress, 1,
79-107.
Shalev, A., Schreiber, S., Galai, T., Melmed, R.,
(1993) Posttraumatic Stress Disorder Following Medical
Events, British Journal of Clinical Psychology,
32(2), 247-253.
Shore, J., Tatum, E., Vollmer, W., (1986) Psychiatric
Reactions to Disaster, The Mount St Helens Experience,
American Journal of Public Health, 143,590-595.
Sporn, M., (1996) The War on Cancer, Lancet, 347,
1377-81.
Stuber, M., Nader, K., Yasuda, P., Pynoos, R.,
& Cohen, S., (1991) Stress Responses after Pediatric
Bone Marrow Transplantation, Preliminary Results
of a Prospective Longitudinal Study, J. Am. Acad.
Child Adolesc. Psychiatry, 30(6), 952-957.
Stuber, M., Christakis, D., Houskamp, B., Kazak,
A., (1996) Posttrauma Symptoms in Childhood Leukemia
Survivors and Their Parents, Psychosomatics, 37(3),
254-61.
Stuber, M., Kazak, A., Meeske, K., Barakat, L.,
Guthrie, D., et. al., (1997) Predictors of Posttraumatic
Stress Symptoms in Childhood Cancer Survivors, Pediatrics,
100(6), 958-64.
Talbert, F., Wagner, P., Braswell, L & Husein,
S., (1995) Analysis of Long-term Stress Reactions
in Emergency Room Patients, An Initial Study, Journal
of Clinical Psychology in Medical Settings, 2(2),
133-148.
Tjemsland, L., Soreide, J., Malt, U., (1996a) Traumatic
distress Symptoms in Early Breast Cancer 1, Acute
Response to Diagnosis, Psycho-oncology, 5, 1-8.
Tjemsland, L., Soreide, J. & Malt, U., (1996b)
Traumatic Distress Symptoms in Early Breast Cancer
11, Outcome Six Weeks Post Surgery, Psycho-oncology,
5,295-303.
Wintgens, A., Boileau, B., Bobacy, P., (1997) Posttraumatic
Stress Symptoms & Medial Procedures in Children,
Canadian Journal of Psychiatry, 42, 611-6.
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: p.mcgrath@qut.edu.au3
|
