| 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.
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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:
p.mcgrath@qut.edu.au3
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