Psycho-Oncology

Psycho-Oncology 19: 665–668 (2010)

Published online 5 June 2009 in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/pon.1589

Brief Report

Distress in women with gynecologic cancer

Rhonda L. Johnson1, Michael A. Gold2 and Karen F. Wyche3
1
Division of Psycho-Oncology, Southern Illinois University School of Medicine, Springfield, IL, USA
2
Department of Obstetrics and Gynecology, Vanderbilt University Medical Center, Nashville, TN, USA
3
Department of Psychiatry and Behavioral Sciences, The University of Oklahoma Health Sciences Center, Oklahoma City, OK, USA

* Correspondence to: Division Abstract

of Psycho-Oncology, Southern
Illinois University School of
Medicine, PO Box 19642,
Springfield, IL 62794–642,
USA. E-mail:
rjohnson@siumed.edu
Received: 10 December 2008
Revised: 2 April 2009
Accepted: 15 April 2009
Objective: The NCCN Distress Thermometer (DT) was administered to 143 women undergoing
chemotherapy for gynecologic cancer over a two-year period. This report describes the
frequency and character of psychological distress in this population and examines the effect of
disease, treatment, and demographic variables on levels of distress.
Method: The DT is a self-administered scale for patients to rate their level of distress from
0 to 10, where 0 represents no distress and 10 represents extreme distress. Further, patients are
asked to choose from among 34 items that constitute sources of distress within the last week.
All women who were undergoing their first chemotherapy treatment at the outpatient clinic at
the University of Oklahoma Cancer Institute for either primary disease or recurrent disease
were asked by the clinical nurses to complete the assessment prior to that first infusion.
Results: Over half (57%) of women reported a score of 4 or greater on the DT and were then
assessed by the oncology psychologist. Women who were younger than age 60 and single were
more likely to be distressed. There were no associations between the type of cancer, stage of
cancer, or insurance status.
Conclusions: A significant percentage (57%) of these women experienced distress at levels that
indicate further evaluation is indicated. This study suggests that early screening and evaluation
are essential in this group of cancer patients.
Copyright r 2009 John Wiley & Sons, Ltd.
Keywords: distress; ovarian cancer; distress thermometer; cancer; oncology

Introduction amended by adding a problem list that asks

Under the National Comprehensive Cancer Net-
work (NCCN) conceptualization, ‘distress’ is a
construct that occurs on a continuum that includes
adjustment disorder, syndromal depression and
anxiety. Since its adoption as a (NCCN) recom-
mended tool for screening psychological distress in
cancer populations, the Distress Thermometer (DT)
[1] has been described in groups of individuals with
mixed cancer diagnoses [2–8] and on a limited basis
for individuals with specific cancer diagnoses [9–13].
Therefore, the DT is meant to be a screening
instrument that (1) initiates a process of more
appropriate evaluation of psychosocial functioning
and (2) provides an opportunity to introduce
interventions that facilitate adjustment to the
diagnosis and treatment of cancer.
The DT was first developed by Roth et al. [9] as a
one item self-report questionnaire. It asked patients
to report distress on a thermometer-like 11-point
Likert Scale with scores ranging from 0 (‘no
distress’) to 10 (‘extreme distress’). When adapted
by the NCCN as part of the Clinical Practice
Guidelines for Distress Management, [1] the DT was
patients to identify any of 34 issues (grouped into
categories of practical, family, emotional, spiritual/
religious, and physical problems) that have been
concerns over the past week. As a screening
instrument, the DT has demonstrated acceptable
sensitivity, (0.77) and specificity, (0.68) relative to
the Hospital Anxiety and Depression Scale and
Brief Symptom Inventory-18 (BSI-18) when using a
cutoff score of 4 in a large multicenter evaluation of
cancer patients with mixed cancer diagnoses [2].
Similar findings have been replicated with cancer
patients in Turkey [6], in adult survivors of
childhood cancer [5], and in a consortium group
of southern European countries [3].
While it is well documented that the DT
instrument has good psychometric properties for
cancer patients; in general, there is less under-
standing of how it might be utilized in specific
populations of individuals with cancer. Certainly,
there are studies that evaluated the instrument with
disease site-specific cancer populations. For exam-
ple, the original instrument was studied in men
with prostate cancer [9] and later the amended
version was validated in that same population at

Copyright r 2009 John Wiley & Sons, Ltd.

666
the beginning of cancer rehabilitation [12] using a
score of 4 or above to differentiate distress. Later
studies also indicated the utility of DT in indivi-
duals undergoing bone marrow transplant, [10]
long-term survivors of brain cancer [11], women
with breast cancer [13,14], and men and women
with lung cancer [15] as previously validated. In
individuals with mixed cancer diagnoses distress
measured by the DT has been correlated with
gender (with women more likely to report higher
levels of distress), performance status, appearance,
physical well-being, and symptoms experienced.
However, in disease-specific studies there is some
variation when looking at associations of psycho-
social stressors and levels of distress. For instance,
for long-term survivors of brain cancer, distress
was more likely to be related to difficulties with
family, emotional, and practical concerns [11].
Patients with breast cancer and lung cancer
[14,15] reported the emotional causes as their
primary distress factor. On the other hand, men
with prostate cancer report levels of distress related
to practical concerns such as getting around,
changes in urination, fatigue, sleep, and sexual
difficulties [9]. While women with gynecologic
cancer have not been specifically studied in relation
to the DT, a growing body of research has
identified significant and higher levels of psycho-
logical distress in the gynecologic cancer popula-
tion [16] when compared to others. For instance,
women with ovarian malignancies report high
levels of depression and often report psychological
needs as secondary to physical needs [17].
To our knowledge no study has evaluated the
utility of the DT in women with gynecologic
cancer. This study examines the frequency and
characteristics of cancer- and treatment-related
problems as measured with the DT in women with
gynecology cancer who are undergoing chemo-
therapy. A study that examines distress in this
population can address the need for screening and/
or further treatment for these women since early
intervention has been shown to decrease levels of
distress later in the treatment process as well
increase patient satisfaction with care.
Methods
Instrument
The DT provides patients a visual picture of
a thermometer to rate their level of distress along
a scale of 0–10 with 0 5 no distress and 10 5
extreme distress. Patients are then asked to choose
which items, from a 34-item list, constitute sources
of distress. The 34 items represent five categories
of problems: physical, family, emotional, spiritual/
religious, and practical [1]. It takes patients about
10 min to complete the instrument.
Copyright r 2009 John Wiley & Sons, Ltd.
R. L. Johnson et al.
Procedure
All women who were undergoing a first chemo-
therapy treatment at the outpatient clinic at the
University of Oklahoma Cancer Institute for either
initial disease or recurrent disease were asked by
clinical nurses to voluntarily complete the DT prior
to that first infusion. All DT instruments were then
forwarded to the clinic’s psychologist for further
evaluation. Women who scored a ‘4’ or higher (the
range of distress) on the DT were contacted by a
psychologist to evaluate them for further interven-
tion. IRB approval was obtained at a later time to
review the charts of women with a diagnosis of
gynecologic cancer that had undergone this process
from 2005 to 2007. Demographic information and
medical data were collected from the patient’s
medical chart and include age, race, partnered status,
work status, type of insurance, treatment regimen,
cancer type, stage, treatment status, and current
disease status. The type of intervention, including
whether psychotropic medications and/or psycho-
therapy were administered, was also recorded.
Analysis
Women were categorized into two groups: women
with a score of 4 or higher on the DT were classified
as distressed relative to those with a score below 4,
nondistressed. This grouping was chosen based
on previous studies that indicate individuals who
score ‘4’ or higher are at risk for clinically significant
distress [9]. Chi Square analyses to evaluate differ-
ences between these two groups were conducted.
Comparisons were made between those women who
were receiving cancer treatments for the first time vs
those who had recurrence of their cancer. The effect
of age, marital status, and work status was assessed
by comparing the proportion of women who scored
4 or greater in these subgroups. Relationships
between problem areas endorsed and distress levels
were also explored with Chi Square analysis.
Results
DTs of 143 women were included in the study. The
majority (54%) was diagnosed with late stage cancer,
was primarily Caucasian (83%), and partnered
(53%). The type of insurance varied widely, with
72% having private insurance (Table 1). Compari-
son of distress and race differences were not analyzed
as the sample was 83% Caucasian.
Over half (57%) of women reported a score of
4 or greater on the DT and were referred to and
evaluated by the oncology psychologist. A higher
proportion of women under age 60 and who were
single (Table 2, p 5 0.008) were stressed compared
with those women 60 and older (Table 2,
p 5 0.008). There was a trend (p 5 0.098) for
distress to be lower in those who have recurred.
Psycho-Oncology 19: 665–668 (2010)
DOI: 10.1002/pon
Distress in gynecological cancer 667

Table 1. Demographic information Chi square analyses were conducted to explore the
Number Percentage
relation of the DT cutoff score to endorsement of
items on the Problem List. Significant predictors of
Ethnicity distress for women who reported distress at 4 or
Caucasian 112 83 greater on the DT were: emotional distress (worry
Native American 12 9
African American 8 6
(w2(1) 5 27.93, pX0.01 and fear (w2(1) 5 14.55,
Hispanic 2 2 pX0.01); concerns about family (children (w2(1) 5
Asian 2 2 6.59, pX0.01); physical problems (nausea (w2(1) 5
Unknown 7 5 13.41, pX0.01 5 0.01)); constipation (w2(1) 5 6.30,
Type of cancer pX0.01); and appearance (w2(1) 5 5.32, pX0.01).
Ovary 78 56 Of the total population of 143 women, 57%
Cervical 28 20 (n 5 82) were referred for evaluation of distress
Endometrial 25 18
Peritoneal 2 2
based on their score of 4 or above. The following
Vaginal 2 2 dispositions were made: Twenty-two of these
Fallopian 1 1 patients reported their distress was transitory and
Gestestational 1 1 not influencing them at significant levels at the time
Mixed (endometrial/ovary) 2 1 of evaluation, so they were not referred for further
Undetermined primary 4 2 intervention. Four patients were treated with
Cancer stage medication only; 17 with counseling only; and 39
1 20 14
2 28 20
for both medication and counseling.
3 64 45
4 23 16
Unstaged 8 5 Discussion
Partnered status
Married 74 53 A significant number of women undergoing treatment
Single 33 24 for a gynecologic cancer experience levels of distress
Widowed 33 24
Unknown 3
that suggest further screening and possible interven-
Insurance type tion is indicated. Other studies have suggested that in
Private 70 50 the cancer population as a whole approximately
Medicare only 18 22 29.6–43.4% of patients experience significant levels of
Medicare and private insurance 31 13 distress [18]. In this study, 57% of the women scored
Medicaid only 15 11 at a level that suggested the need for further
Medicaid and medicare 7 6 evaluation. Forty-two percent of this total was then
referred for psychosocial intervention. These numbers
support the need for early screening and intervention
Table 2. Proportion of women who scored in the distress among this group of cancer patients.
category as a function of demographic and clinical variables Correlations of demographic variables with DT
‘Unstressed’ ‘Stressed’ Significance
scores Z4 indicate that younger women are more
below 4 4 or above likely to be distressed than those women of over
on DT on DT age 60. There are several reasons this might be so.
N (%) N (%) We did not ask if the women had children that were
Insurance status still dependent. The concerns about having children
Private and medicare 54 (68%) 47 (77%) p 5 0.2 while one has cancer have been shown previously to
Medicaid and medicare 26 (32%) 14 (23%) be related to distress [19] in women. In this study,
Age however, worries about children were also corre-
60 and over 57 (70%) 30 (48%) p 5 0.008 lated with a higher distress score. Developmentally,
Under 60 24 (30%) 32 (52%) it would certainly be more expected that older
Marital status
Single 53 (68%) 54 (87%) p 5 0.008
women would be facing the task of facing and
Married 25 (32%) 8 (13%) preparing for end of life. Further, older women may
Employment status also have experienced chronic or life-threatening
Employed and retired 24 (30%) 22 (36%) p 5 0.44 illness in a loved one so are less sensitive to the
Not employed 56 (70%) 39 (64%) trauma of cancer diagnosis and treatment as well as
Clinical status threat to their own life. Several other findings are
Initial diagnosis 31 (39%) 33 (53%) p 5 0.098 likely to be influenced by age differences including
Recurred 48 (61%) 29 (47%)
trends for those who were retired and who were
treated for recurrence to be less distressed.
Women who endorsed feeling emotionally dis-
There was no association between distress and type tressed were much more likely to score at levels that
of cancer, stage of disease, insurance status, or triggered a more close evaluation. This finding
work status (Table 2). suggests that emotional difficulties should be an area

Copyright r 2009 John Wiley & Sons, Ltd. Psycho-Oncology 19: 665–668 (2010)
DOI: 10.1002/pon
668
of concern in this population. It also validates the use
of DT as a screening measure to assess distress
particularly in light of other research, which concludes
that oncologists and nurses do a less than adequate
job detecting mood or anxiety comorbidity [18].
Conclusion
This study describes the level and types of distress
experienced by women undergoing chemotherapy
for gynecologic cancer. These findings support the
importance of psychosocial screening measures in
gynecologic cancer patients. The DT was a useful
method to screen, triage, and prioritize patient
interventions as women begin chemotherapy for
gynecologic cancer.
Further, because it is self-administered, the DT is
a relatively cost effective way to assess distress
among patients, allowing health-care professionals
to focus on those patients who are most likely to
need further evaluation and treatment. It can be
administered in a busy clinical setting without
disrupting the flow of treatment, so that they can
be evaluated later by trained individuals and
referred to the appropriate health-care provider
(e.g. if the patient’s symptoms are physically based,
the referral would go to nursing for follow up vs to
mental health if more mental health related).
The instrument, used as a clinical tool, can be
incorporated in the patient’s chart to provide a
‘talking point’ for physicians. These ‘talking points’
can serve as clinically based alerts whereby the
physician can demonstrate to the patient that they
are also concerned about social, emotional and
spiritual issues the patient faces as she undergoes
her treatment. The provider can quickly scan the
chart, look at the outcome of any intervention that
occurred in response to the patient’s feedback from
the DT and ask if the difficulty has improved. This
intervention indicates to that patient the physician
is coordinating the entirety of their treatment and
that the physician is concerned about the patient’s
overall well-being. It is likely that this intervention
could increase patient satisfaction. This considera-
tion will be investigated in future research.
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Psycho-Oncology 19: 665–668 (2010)
DOI: 10.1002/pon