| 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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