Lung Cancer Stigma, Anxiety, Depression and Symptom Severity

Article (PDF Available)inOncology 85(1):33-40 · June 2013with190 Reads
DOI: 10.1159/000350834 · Source: PubMed
Abstract
Objectives: Compared to other cancers, lung cancer patients report the highest levels of psychological distress and stigma. Few studies have examined the relationship between lung cancer stigma (LCS) and symptom burden. This study was designed to investigate the relationship between LCS, anxiety, depression and physical symptom severity. Methods: This study employed a cross-sectional, correlational design to recruit patients online from lung cancer websites. LCS, anxiety, depression and physical symptoms were measured by patient self-report using validated scales via the Internet. Hierarchical multiple regression was performed to investigate the individual contributions of LCS, anxiety and depression to symptom severity. Results: Patients had a mean age of 57 years; 93% were Caucasian, 79% were current or former smokers, and 74% were female. There were strong positive relationships between LCS and anxiety (r = 0.413, p < 0.001), depression (r = 0.559, p < 0.001) and total lung cancer symptom severity (r = 0.483, p < 0.001). Although its contribution was small, LCS provided a unique and significant explanation of the variance in symptom severity beyond that of age, anxiety and depression, by 1.3% (p < 0.05). Conclusions: Because LCS is associated with psychosocial and physical health outcomes, research is needed to develop interventions to assist patients to manage LCS and to enhance their ability to communicate effectively with clinicians.
E-Mail karger@karger.com
Clinical Study
Oncology 2013;85:33–40
DOI: 10.1159/000350834
Lung Cancer Stigma, Anxiety, Depression
and Symptom Severity
JanineK.Cataldo JenniferL.Brodsky
Department of Physiological Nursing, University of California San Francisco School of Nursing, San Francisco, Calif. , USA
to develop interventions to assist patients to manage LCS
and to enhance their ability to communicate effectively
with clinicians.
Copyright © 2013 S. Karger AG, Basel
Introduction
In 2012, over 226,000 new cases of lung and bron-
chuscancer were diagnosed in the USA
[1] . Lung cancer
is expected to account for 14% of new cases of cancer and
will be the leading cause of cancer death in both men and
women
[1] . Overall survival in lung cancer remains low;
however, changes in treatment, population growth and
aging demographics and patient management have
brought about an increase in long-term lung cancer sur-
vivors
[2, 3] .
Lung cancer survivors experience more physical and
psychosocial problems for a longer period of time than
survivors of other cancers
[4, 5] . In a study of health and
disability among cancer survivors, lung cancer survivors
experienced significantly poorer general health status
and more psychological problems than those with other
types of cancer
[5] . Whether they have ever smoked or
not, lung cancer patients feel stigmatized because their
disease is strongly associated with smoking
[6, 7] . In ad-
dition, lung cancer stigma (LCS) has been shown to be a
significant predictor of increased depression and de-
creased quality of life (QOL)
[6] . With an increased num-
ber of lung cancer survivors and a dearth of information
Key Words
Lung cancer · Lung neoplasm · Lung tumor · Stigma ·
Anxiety · Depression · Symptom severity · Symptom
burden· Physical symptoms · Blame
Abstract
Objectives: Compared to other cancers, lung cancer pa-
tients report the highest levels of psychological distress and
stigma. Few studies have examined the relationship be-
tween lung cancer stigma (LCS) and symptom burden. This
study was designed to investigate the relationship between
LCS, anxiety, depression and physical symptom severity.
Methods: This study employed a cross-sectional, correla-
tional design to recruit patients online from lung cancer
websites. LCS, anxiety, depression and physical symptoms
were measured by patient self-report using validated scales
via the Internet. Hierarchical multiple regression was per-
formed to investigate the individual contributions of LCS,
anxiety and depression to symptom severity. Results: Pa-
tients had a mean age of 57 years; 93% were Caucasian, 79%
were current or former smokers, and 74% were female.
There were strong positive relationships between LCS and
anxiety (r = 0.413, p < 0.001), depression (r = 0.559, p < 0.001)
and total lung cancer symptom severity (r = 0.483, p< 0.001).
Although its contribution was small, LCS provided aunique
and significant explanation of the variance in symptom se-
verity beyond that of age, anxiety and depression, by 1.3%
(p < 0.05). Conclusions: Because LCS is associated with psy-
chosocial and physical health outcomes, research is needed
Received: October 24, 2012
Accepted after revision: March 13, 2013
Published online: June 29, 2013
Janine K. Cataldo, PhD, RN
Department of Physiological Nursing, UCSF School of Nursing
2 Koret Way, Room N611Q, Box 0610
San Francisco, CA 94143-0610 (USA)
E-Mail Janine.Cataldo
@ nursing.ucsf.edu
© 2013 S. Karger AG, Basel
0030–2414/13/0851–0033$38.00/0
www.karger.com/ocl
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34
on all aspects of their health and QOL, additional re-
search is needed to understand not only the associations
between LCS and psychosocial factors but also the asso-
ciations between LCS and physical symptom burden [3] .
Theoretical Framework
The theoretical framework for this study includes the
LCS model [
7 ; Brown-Johnson and Cataldo, unpubl.
data] and the ‘allostatic load’ theoretical model of stress
and adaptation
[8, 9] . Based on a conceptual model of
perceived stigma, Berger et al.
[10] developed the items
for the HIV stigma scale. This model was adapted to guide
the development of the Cataldo Lung Cancer Stigma
Scale (CLCSS) and is published elsewhere
[6, 7] .
Health-related stigma (HRS) is a personal experience
related to a health condition
[6] , is characterized by the
perception of exclusion, rejection and blame
[11] , and
contributes to psychological, physical and social morbid-
ity
[12] . The judgment inherent in any HRS is medically
unwarranted and may adversely affect health status
[11] .
Higher levels of HRS are associated with depression, lim-
ited social support and decreased treatment adherence
[10, 13–19] . Stigma has been extensively studied in HIV/
AIDS, mental illness, epilepsy and physical disability
[13].
Evidence suggests that HRS is an important factor in the
care of lung cancer patients
[20] .
LCS is a perceived stigma and refers to the anticipa-
tionor fear of discrimination and an awareness of nega-
tive attitudes and actions related to lung cancer
[13] . It is
a perceived HRS that is defined as a personal experience
characterized by exclusion, rejection, blame or devalua-
tion that results from anticipation of an adverse judgment
related to lung cancer. A greater negative reaction occurs
when factors that contribute to a disease, such assmok-
ing, can be associated with stigma
[21] . Stigma in lung
cancer is based on the belief that the individual caused
their own cancer via smoking. Regardless of their smok-
ing status, lung cancer patients report stigmatization
from clinicians, family and community because the dis-
ease is strongly associated with smoking
[20] . Strong as-
sociations have been found among LCS, depression and
QOL, in both smokers and nonsmokers
[6] .
In a recent review by Chambers et al.
[22] , data suggest
that HRS is a reality in the lung cancer experience and
contributes to the excess psychological distress experi-
enced by lung cancer patients. Smokers have become a
marginalized group in society
[23] . Current and former
smokers have identified several factors that contribute
toperceptions of LCS, including the following: percep-
tions of smoking as a choice not an addiction; discrimina-
tion perpetrated against smokers through no smok-
ingpolicies, and perceptions that smokers are less edu-
cated
[23] . Chambers et al. [22] recommend that while
LCS is known to influence both patients and family care-
givers, its full impact is unknown and further study is
warranted.
LCS, Anxiety and Depression
Compared to other types of cancer, lung cancer pa-
tients experience the greatest amount of psychological
distress
[24] and are at higher risk for psychosocial prob-
lems during and after treatment
[25] . In an investigation
of the variation in distress among 14 cancer diagnoses,
it was found that the prevalence of psychological distress
varied across cancers, and lung cancer was the
highest at
43.4%
[24] . Studies have shown that 1 out of4
persons
with lung cancer experiences periods of depression or
other psychosocial problems during their treatment
[25] . In one study, at the time of diagnosis, 23% of 129
lung cancer patients were depressed and 16% were anx-
ious. After 3 months, 30% had died or were terminally
ill; of the remaining 82 patients, 44% were depressed
[26] . A UK study found that the prevalence of depres-
sionwas 43% among 352 patients with small cell lung
cancer and 21% among 366 patients with non-small cell
lung cancer. The prevalence of anxiety was 43 and 25%,
respectively
[27] . In a recent study, a positive association
was found between perceived stigma and depression
among lung cancer patients (r = 0.46, p < 0.001) which
accounted for the unique variance in depressive symp-
tomatology above and beyond demographic and clini-
cal factors
[28] . In our previous work, regardless of
whether or not a person with lung cancer had ever
smoked, LCS had a strong positive relationship with de-
pression (r = 0.68, p < 0.001) and a strong inverse rela-
tionship with QOL (r = –0.65, p < 0.001)
[6] . This work
needs to be replicated.
LCS and Symptom Severity
Most newly diagnosed lung cancer patients present
with advanced disease and more symptoms than other
newly diagnosed cancer patients
[29] . Lung cancer pa-
tients experience greater symptom severity throughout
their illness trajectory
[30–32] . The most common phys-
ical symptoms include dyspnea, fatigue, insomnia and
pain
[30–33] . Dyspnea is more common in patients with
lung cancer than other cancers and follows a pattern of
gradual increase with a plateau, and it then subsides at
rest
[34–36] . Perez-Soler et al. [37] found that up to 61%
of lung cancer patients present with dyspnea at the time
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Severity
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35
of diagnosis. Pain is also highly prevalent among lung
cancer patients, with reported rates of 28–51%
[38, 39] .
Symptoms that occur simultaneously may have a syner-
gistic effect on each other and on important patient out-
comes [39] . In a 2006 study, Fox and Lyon [40] found that
fatigue and pain along with depression were reported
bythe majority of lung cancer survivors. Lung cancer pa-
tients have high levels of sleep disturbance
[41] . Sleep in
lung cancer patients is punctuated by long periods of
awakeness, similar to patients with chronic obstructive
pulmonary disease
[42] .
Very little research exists on factors that contribute
toincreased symptom severity
[30] . The role of LCS as a
contributing factor to physical lung cancer symptom se-
verity is not known. HRS ascribed to controllable factors
(e.g., smoking, drug abuse) elicits a greater negative reac-
tion than stigma ascribed to uncontrollable factors
[21,
43]
. Lung cancer is associated with short survival times,
and self-attribution can play an important role in the lev-
el of distress
[44] . Patients with lung cancer can receive
stronger messages of doom from family caregivers and
clinicians
[24] . They often feel responsible for their diag-
nosis because of smoking or other lifestyle behaviors and
for the difficulties this causes their families
[24] .
No studies have examined the severity of LCS and its
relationship with both psychosocial and physical lung
cancer symptom burden. The purpose of this study was
to (1) explore the severity of LCS and its relationship with
the severity of psychosocial (anxiety, depression) symp-
toms and physical (i.e., appetite, fatigue, cough, dyspnea,
hemoptysis, pain) symptom severity and (2) identify the
contributions of demographic and clinical factors,anxi-
ety, depression and LCS to physical symptom severity. It
was hypothesized that positive relationships would exist
between LCS and both psychosocial (anxiety and depres-
sion) and physical symptoms. In addition, after account-
ing for the effects of significant demographic and clinical
factors, anxiety and depression, it was expected that LCS
would make a significant independent contribution to the
percentage of explained variance in total lung cancer
symptom severity.
Study Aims and Hypotheses
The specific aims and hypotheses of this study are as
follows: (1) to investigate the relationship between LCS
and anxiety, depression and symptom severity (it is ex-
pected that there will be a positive relationship), and
(2)to explore whether LCS has a unique contribution to
the explanation of lung cancer symptom severity after
controlling for age, anxiety and depression. It is expect-
ed that LCS will have a unique and significant contribu-
tion to lung cancer symptom severity after controlling
for covariates.
Materials and Methods
Design
This descriptive study, with a cross-sectional, correlational de-
sign,
evaluated the relationships among LCS, anxiety, depression
and symptom severity. Institutional review board approval was
received from the University of California San Francisco Com-
mittee on Human Research. Participants were recruited online
and were able to complete the questionnaires online. An active
link to the study’s homepage was posted on websites frequent-
ed by potential study participants, including, but not limited
tothe following: http://www.LUNGevity.org/, http://www.ALA.
org, http://supportgroups.cancercare.org/, http://www.oncochat.
org/, http://www.vitaloptions.org/ and http://www.beverlyfund.
org. Participants were able to access the study questionnaires di-
rectly from these websites; however, there was not a mechanism
to track the website of origination. Web-based, online data collec-
tion creates opportunities to conduct research among difficult to
access populations. However, special consideration needs to be
given as to how the study was advertised and how the data were
collected to ensure high-quality data, privacy protection and va-
lidity of findings
[45] . Support was elicited from the website ad-
ministrators in advertising the study to increase the response rate,
and all instruments, including the demographic questionnaire
and the consent form, were formatted into an individual active
HTML web page with encryption using RedCap. The first draft of
the online survey was reviewed for edits by the site administra-
torsbefore posting. The posting included an introduction to the
study, a pledge of anonymity, the researcher’s contact informa-
tion and a direct link to the questionnaires. The Internet data were
properly secured when stored on a computer with a password-
accessed server. Data were collected as a spreadsheet and re-
main
edanonymous with no information linking questionnaires
to
participants. Informed consent was obtained from all partici-
pants
prior to participation.
M e a s u r e s
Lung Cancer Stigma
In our preliminary work, the CLCSS was found to be a reliable
and valid measure in a diverse sample of people with lung cancer
(Cronbach’s α = 0.97 and 0.96)
[6, 7] . Construct validity was sup-
ported by expected relationships with related constructs, i.e., self-
esteem, depression, social support and social conflict. The CLCSS
consists of 31 items; each item is rated on a 4-point Likert-type
scale (strongly disagree, disagree, agree and strongly agree), with
higher values indicating greater agreement with the item. For this
study, Cronbach’s α for the total scale was 0.96.
A n x i e t y
The Spielberger State Anxiety Questionnaire is a 20-item scale
that evaluates the emotional responses of worry, nervousness, ten-
sion and feelings of apprehension related to how people feel ‘right
now’ in a stressful situation and is expected to correlate positive-
lywith stigma. This scale asks participants to rate their emotional
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response intensity on a 4-point scale (1 = not at all, 2 = somewhat,
3 = moderately so, and 4 = very much so). The scores for each of
the items are summed, and the total score can range from 20 to
80. Construct validity was determined by testing participants un-
der stressful and nonstressful conditions. Anxiety scores in-
creasedas the experimental stress conditions increased. In a study
of oncology outpatients, Cronbach’s α was 0.94
[46] . For this
study, Cronbach’s α for the total scale was 0.90.
D e p r e s s i o n
The Center for Epidemiologic Studies-Depression Scale (CES-
D) is a 20-item scale that is expected to correlate positively with
stigma. The CES-D is a valid and reliable tool that has been widely
used for self-ratings of depression in clinical populations, includ-
ing people with cancer and people with HIV/AIDS
[47] . Partici-
pants respond on a 4-point scale (0–3), yielding total scores of
0–60. Higher scores indicate greater depression. For this study,
Cronbach’s α for the total scale was 0.95.
Symptom Severity
The Lung Cancer Symptom Scale (LCSS) is a disease- and
site-specific instrument that measures the physical and function-
al dimensions of lung cancer symptoms in persons with lung can-
cer. The LCSS emphasizes evaluation of the severity of symptoms
associated with lung cancer and their effect on activity status and
general QOL. The scale has 9 items, 6 measuring major symp-
toms of lung cancer (i.e., appetite loss, fatigue, cough, dyspnea,
hemoptysis and pain) and 3 summary items related to total
symptoms. Each item is given an individual score, with 0 being
the lowest (best) rating and 5 the highest (worst) rating for sever-
ity of individual symptoms. An average of all 9 items is the total
score that represents the sum severity of individual symptoms
and the impact of those symptoms on function and QOL. Ad-
ministration time is 3–5 min. The LCSS was tested in over 1,000
patients with lung cancer and proven to be valid and reliable
[48] .
In the initial psychometric analysis, content validity revealed a
mean of 96% agreement for all major symptoms among 52 ex-
perts surveyed (confidence interval 86–99%; p = 0.05). A total of
69 patients with non-small cell lung cancer and 52 patients with
small cell lung cancer confirmed that the symptoms matched
their experiences. Past test-retest reliability indicated high pa-
tient reproducibility for 52 patients (r > 0.75, p < 0.01 for all
items). Hollen et al.
[48] concluded that the LCSS demonstrates
(1) good feasibility, reliability and content validity and (2) high
interrater reliability. Overall, the LCSS has consistently demon-
strated good feasibility, reliability (internal consistency) and con-
vergent validity
[48–51] . For this study, Cronbach’s α for the to-
tal scale was 0.94.
D a t a A n a l y s i s
Univariate analyses (i.e., frequencies and descriptive) were per-
formed for all variables. Correlational analyses were performed to
examine the bivariate relationships between demographic and
study variables. According to the bivariate analysis, the only sig-
nificant covariate that needed to be added to the model in addi-
tionto LCS, anxiety and depression was age. After controlling for
demographic and disease-related covariates (i.e., age), a hierarchi-
cal multiple regression was performed to investigate the individu-
al contributions of anxiety, depression and stigma to physical and
psychosocial lung cancer symptom burden.
R e s u l t s
Sample
The 144 participants ranged in age from 23 to 79years
(mean age 56.7 years); 75.9% were partnered, and 13.2%
of the sample lived alone. The majority of the partici-
pants were Caucasian (93.1%); 2.1% were Asian, 1.4%
African-American, 2.1% Hispanic and 2.1% other race/
ethnicity. Because of small cell sizes, for the analysis, ra-
cial/ethnic categories were collapsed into Caucasian and
non-Caucasian ( table 1 ). Seventy-nine percent of the
sample were either current or former smokers (ever
smokers); nearly 55% met the CES-D criteria for depres-
sion (total score 16; table1 ). Nearly 26% were men and
almost 92% had 12 years of education or greater (data
not shown).
LCS, Anxiety, Depression and Symptom Severity
The means, standard deviations and ranges for the
study variables are given in table2 . The participants (n =
144) reported a mean stigma level of 75.7 (SD 18.3; pos-
sible range 31–124), and the mean anxiety level reported
was 43.3 (SD 14.9; possible range 20–80). The cutoff score
for a diagnosis of depression is a total score 16; themean
CES-D depression score for the total sample (n= 144) was
19.6 (SD 13.2).
Table 1. Descriptive statistics of demographics and health status
Characteristic Mean SD Range
Age, years (n = 144) 56.65 11.05 23–79
Years of education (n = 143) 15.01 5.08 2–51
n%
Race (n = 144)
Caucasian 134 93.1
Non-Caucasian 10 6.9
Marital status (n = 141)
Married/living with intimate partner 107 75.9
Widowed, separated, divorced,
never married 34 24.1
Living arrangements (n = 144)
Alone 19 13.2
With others 125 86.8
Currently employed (n = 144) 64 44.5
Depressed mood (n = 144)
CES-D score ≥16 79 54.9
Smoking status (n = 143)
Ever (>100 cigarettes in lifetime) 113 79.0
Never 30 21.0
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Among individual lung cancer symptoms (possible
range 1–5; higher score indicates greater severity), fatigue
was reported as most severe, with a mean score (n= 144)
of 2.45 (SD 0.91). The mean dyspnea score (n = 143) was
2.29 (SD 0.97); the mean pain score (n = 143) was 1.87
(SD 0.92); the mean cough score (n = 144) was 1.76 (SD
0.93); the mean appetite loss score (n = 144) was 1.75 (SD
0.94), and the mean hemoptysis score (n = 144) was 1.37
(SD 0.8).
For the lung cancer symptom severity dimension mea-
sures (possible range 1–5; higher score indicates greater
severity), the mean score for ‘How bad are your symp-
toms?’ (n = 141) was 1.91 (SD 0.95), and the mean score
for ‘Lung cancer interferes with normal activities’ (n =
144) was 2.36 (SD 1.01). Participants rated their QOL ‘to-
day’ (n = 143) with a mean score of 2.03 (SD 0.88).
Themean total lung cancer symptom severity score for
the sample (n = 144) was 17.8 (SD 6.5; possible range
9–45).
Hypotheses
Both hypotheses 1 and 2 were supported. For hypoth-
esis 1, there were strong positive relationships between
LCS, anxiety, depression and symptom severity among
lung cancer patients. The results in table3 reveal strong
Pearson product-moment correlations in the expected
directions for LCS and anxiety (r = 0.413, p < 0.001), de-
pression (r = 0.559, p < 0. 001) and total lung cancer
symptom severity (r = 0.483, p < 0.001). As shown in ta-
ble4 , significant associations were found between LCS
and all individual symptoms and symptom severity di-
mensions (i.e., ‘How bad are your symptoms?’, interfer-
ence with normal activities and QOL).
The second hypothesis, that LCS would have a signifi-
cant and unique role in explaining symptom severity after
controlling for age, anxiety and depression, was also sup-
ported. After accounting for these covariates, LCS had a
small but significant and unique contribution to the ex-
planation of the variance in symptom severity ( table5 ). A
simultaneous multiple regression with 4 independent
variables revealed an overall model that explained nearly
53% of the total variance of lung cancer symptom sever-
Table 2. Descriptive statistics for LCS, anxiety, depression and lung cancer symptom severity
Mean SD Range Possible range
LCS (n = 144) 75.69 18.32 34–121 31–124
Anxiety (n = 144) 43.30 14.88 20–78 20–80
Depression: CES-D (n = 144) 19.57 13.16
0–60 0–60
Physical symptoms (n = 144)
Individual lung cancer symptoms
Fatigue (n = 144)
2.45 0.91 1–4 1–5
Dyspnea (n = 143)
2.29 0.97 1–4 1–5
Pain (n = 143)
1.87 0.92 1–4 1–5
Cough (n = 144)
1.76 0.93 1–4 1–5
Appetite loss (n = 144)
1.75 0.94 1–4 1–5
Hemoptysis (n = 144)
1.37 0.80 1–4 1–5
Lung cancer symptom severity dimensions
How bad are symptoms (n = 141)
1.91 0.95 1–4 1–5
Lung cancer interferes with normal activities (n = 144)
2.36 1.01 1–4 1–5
How is your QOL today? (n = 143)
2.03 0.88 1–4 1–5
Lung cancer total symptom severity score 17.76
6.54 9–36 9–45
A higher score indicates greater severity.
Table 3. Pearson product-moment correlations for LCS, anxiety,
depression and lung cancer symptom severity (n = 144)
LCS Anxiety Depression
LCS –
Anxiety
0.413**
––
Depression (CES-D)
0.559** 0.795**
Lung cancer symptom
severity (total) 0.483** 0.488** 0.706**
**p < 0.001.
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ity (F
4,139
= 38.98, p < 0.001). As anticipated, LCS pro-
vided a small but unique and significant explanation of
the variance in symptom severity over and above that of
age, anxiety and depression, by 1.3% (p < 0.05).
D i s c u s s i o n
This study expands the understanding of the associa-
tion of LCS with both psychosocial factors
[6] and physi-
cal factors (e.g., physical symptom severity). This work is
consistent with the Cataldo Lung Cancer Stigma Model
[7] . Precursors of LCS include awareness of society’s at-
titudes toward one’s diagnosis that leads to social isola-
tion, discrimination and a sense of stigma and shame re-
lated to smoking with responses that include both emo-
tional and physical reactions.
Some evidence suggests that LCS is a hindrance to
help-seeking behavior and prevents early detection and
treatment
[52–55] and may keep patients from report-
ingdistressing symptoms. A significant number of smok-
ers report feeling unworthy of treatment
[53] . Patients
arefrequently reluctant to report respiratory symptoms
when they are smokers, a behavior clearly related to feel-
ings of shame and guilt
[54] . This reluctance is a conse-
quence of the general supposition that lung cancer is a
self-inflicted disease. Because lung cancer is widely viewed
as a smoker’s disease, those who have never smoked often
experience the same stigmatization, namely a feeling that
their disease was self-inflicted
[56, 57] . Although the
prognostic outlook for lung cancer patients is changing,
clinicians know that lung cancer has one of the poorer
prognoses of all human malignancies and that might un-
intentionally limit communication, treatment options
and symptom management
[55] .
Stigma is a documented barrier to communication for
cancer patients
[58] . Stigma contributes to communica-
tion difficulties (i.e., stereotyping, status and power differ-
entials between majority and minority groups and lack
ofcultural awareness of health professionals), which are
implicated in poorer health service delivery and worse pa-
tient outcomes
[49] . This barrier exists for many health
conditions, including HIV, obesity and mental illness, and
results in increased patient distress and poor patient out-
comes
[22, 50, 51, 58] . Across all stages of disease, patients
with lung cancer report inadequate patient communica-
tion related to the felt experience of stigma on key topics
such as prognosis, palliative care and symptom manage-
ment
[58] . Information exchange between patients and
clinicians is acritical interface that can influence subse-
quent health-seeking behavior and management of com-
plex treatment regimens and affect a patient’s health status
over time
[59] . Open and nonbiased discussion between
clinicians and lung cancer patients promotes favorable
outcomes, including satisfaction with care, adherence to
treatment, increased patient confidence and improved
physical and psychological well-being
[58, 60] . Quality of
care for lung cancer patients depends on effective patient-
clinician communication
[59, 61] . Patients who establish
open channels of communication with clinicians are more
likely to engage in subsequent self-management.
According to Link and Phelan [62] , the stress associ-
ated with stigma is especially difficult for those with dis-
ease-associated stigma. In addition to being at risk for
Table 5. Simultaneous multiple regression: the effect of LCS on
lung cancer symptom severity controlling for age, anxiety and de-
pression (n = 144)
Variable R
2
βR
2
change d.f. F p
Overall 0.529 4.139 38.98 <0.001
Age
Anxiety
Depression
LCS
0.092
–0.209
0.838
0.140
0.095
0.174
0.246
0.013
1.142
1.141
1.140
1.143
14.972
26.040
49.737
38.983
<0.001
<0.001
<0.001
0.050
d.f. = Degrees of freedom.
Table 4. Pearson product-moment correlations for LCS, individ-
ual symptoms, symptom severity dimensions and total symptom
severity
LCS
Individual symptoms
Appetite loss (n = 144)
0.269**
Cough (n = 144)
0.358**
Dyspnea (n = 143)
0.279**
Fatigue (n = 144)
0.328**
Hemoptysis (n = 144)
0.400**
Pain (n = 143)
0.460**
Symptom severity dimensions
How bad are symptoms (n = 141)
0.381**
Lung cancer interferes with normal activities (n = 144)
0.259**
How is your QOL today? (n = 143)
0.278**
Total symptom severity (n = 144)
0.429**
**p < 0.001.
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Lung Cancer Stigma and Symptom
Severity
Oncology 2013;85:33–40
DOI: 10.1159/000350834
39
stress-related comorbidities, the clinical course and
symptom experience of the stigmatized illness (e.g., lung
cancer) itself may be worsened. In addition, other out-
comes such as the ability to work or sustain a social sup-
port network may be impaired. The fear of being labeled
with lung cancer may cause individuals to delay or avoid
seeking treatment, while those already labeled may decide
to distance themselves from the label, forgoing treatment
orbecoming noncompliant
[62] .
These findings are also consistent with the ‘allostatic
load’ theoretical model of stress and adaptation
[9] . The
term allostatic load, coined by McEwen and Stellar
[8] in
1993, is defined as the physiologic consequences of chron-
ic exposure to stressors. According to this model, fre-
quent activation of the neuroendocrine stress response
(i.e., an interplay among the hypothalamus, pituitary
gland, adrenal medulla and sympathetic nerve terminals)
can damage the body over time. Further downstream sig-
nals can convert psychosocial stress into cellular dysfunc-
tion. Regardless of the source of stress, there are common
biological pathways that attempt to mediate the effects of
stress on the body. Adaptation to stress involves activa-
tion of neural, neuroendocrine and neuroendocrine-im-
mune mechanisms. The main hormonal mediators of the
stress response, cortisol and epinephrine (adrenaline),
have both protective and damaging effects on the body;
they are protective in the short run and damaging over
longer time intervals. If the activation of these systems
occurs over long periods of time, and if coping responses
are inadequate, there can be an acceleration of patho-
physiology. This kind of stress can cause both psycho-
logical and physical symptoms and can eventually weak-
en the body’s immune system, affecting both morbidity
and mortality. Over longer time intervals, ‘allostatic load’
exacts a cost that can accelerate disease processes.
This study has several limitations. The sample is mod-
erate in size and does not reflect the overall population of
lung cancer patients, as the participants were younger
and mostly female and Caucasian. Although we are un-
able to make statements of causality, this study suggests
that LCS is a unique predictor (i.e., above and beyond age,
anxiety and depression) of patient outcomes. Further re-
search is needed in larger samples and over time to vali-
date these findings and further understand the associa-
tions among LCS, stress and psychological and physical
outcomes. In addition, improved patient-clinician com-
munication within the context of LCS may result in im-
provements in self-care management
[63, 64] . Research
is needed to plan and test symptom management inter-
ventions to assist patientsto deal with LCS and to en-
hance their ability to communicate more effectively with
clinicians
[3] .
References
1 Siegel R, Naishadham D, Jemal A: Cancer sta-
tistics, 2012. CA Cancer J Clin 2012;
62: 10–29.
2 Jänne PA, Freidlin B, Saxman S, Johnson DH,
Livingston RB, Shepherd FA, Johnson BE:
Twenty-five years of clinical research for pa-
tients with limited-stage small cell lung carci-
noma in North America. Cancer 2002;
95:
1528–1538.
3 Sugimura H, Yang P: Long-term survivor-
shipin lung cancer: a review. Chest 2006;
129:
1088–1097.
4 Schag CAC, Ganz PA, Wing DS, Sim MS, Lee
JJ: Quality of life in adult survivors of lung,
colon and prostate cancer. Qual Life Res 1994;
3: 127–141.
5 Hewitt M, Rowland JH, Yancik R: Cancer sur-
vivors in the United States: age, health, and
disability. J Gerontol A Biol Sci Med Sci 2003;
58: 82–91.
6 Cataldo JK, Jahan TM, Pongquan VL: Lung
cancer stigma, depression and quality of life
among ever and never smokers. Eur J Oncol
Nurs 2011;
16: 264–269.
7 Cataldo JK, Slaughter R, Jahan TM, Pongquan
VL, Hwang WJ: Measuring stigma in people
with lung cancer: psychometric testing of the
Cataldo Lung Cancer Stigma Scale. Oncol
Nurs Forum 2011;
38:E46–E54.
8 McEwen BS, Stellar E: Stress and the individ-
ual. Mechanisms leading to disease. Arch In-
tern Med 1993;
153: 2093–2101.
9 McEwen BS, Wingfield JC: What is in a name?
Integrating homeostasis, allostasis and stress.
Horm Behav 2010;
57: 105–111.
10 Berger BE, Ferrans CE, Lashley FR: Measur-
ing stigma in people with HIV: psychometric
assessment of the HIV stigma scale. Res Nurs
Health 2001;
24: 518–529.
11 Weiss MG, Ramakrishna J: Stigma interven-
tions and research for international health.
Lancet 2006;
367: 536–538.
12 Major B, O’Brien LT: The social psychology
of stigma. Ann Rev Psychol 2005;
56: 393–421.
13 Van Brakel W: Measuring health-related stig-
ma – a literature review. Psychol Health Med
2006;
11: 307–334.
14 Kalichman SC, Ramachandran B, Catz S: Ad-
herence to combination antiretroviral thera-
pies in HIV patients of low health literacy. J
Gen Intern Med 1999;
14: 267–273.
15 Ablon J: The nature of stigma and medical
conditions. Epilepsy Behav 2002;
3: 2–9.
16 Fife BL, Wright ER: The dimensionality of
stig-
ma: a comparison of its impact on the self of
persons with HIV/AIDS and cancer. J Health
Soc Behav 2000;
41: 50–67.
17 Nyblade L: Measuring HIV stigma: existing
knowledge and gaps. Psychol Health Med 2006;
11: 335–345.
18 Soares M, Darmon M, Salluh JIF, Ferreira CG,
Thiéry G, Schlemmer B, Spector N, Azoulay
E: Prognosis of lung cancer patients with life-
threatening complications. Chest 2007;
131:
840–846.
19 Nava S, Sturani C, Hartl S, Magni G, Ciontu
M, Corrado A, Simonds A; EuropeanRespi-
ratory Society Task Force on Ethics and deci-
sion-making in end stage lung disease: End-
of-life decision-making in respiratory inter-
mediate care units: a European survey. Eur
Respir J 2007;
30: 156–164.
20 Chapple A, Ziebland S, McPherson A: Stigma,
shame, and blame experienced by patients
with lung cancer: qualitative study. BMJ 2004;
328: 1470.
21 Weiner B, Perry RP, Magnusson J: An attribu-
tional analysis of reactions to stigmas. J Pers
Soc Psychol 1988;
55: 738–748.
Downloaded by:
UCSF Library & CKM
132.174.255.215 - 1/10/2014 2:25:19 AM
Cataldo/Brodsky
Oncology 2013;85:33–40
DOI: 10.1159/000350834
40
22 Chambers SK, Dunn J, Occhipinti S, Hughes
S, Baade P, Sinclair S, Aitken J, Youl P,
O’Connell DL: A systematic review of the im-
pact of stigma and nihilism on lung cancer
outcomes. BMC Cancer 2012;12:184.
23 Stuber J, Galea S, Link BG: Smoking and the
emergence of a stigmatized social status. Soc
Sci Med 2008;
67: 420–430.
24 Zabora J, BrintzenhofeSzoc K, Curbow B,
Hoo
ker C, Piantadosi S: The prevalence of psy-
chological distress by cancer site. Psychooncol-
ogy 2001;
10: 19–28.
25 Carlsen K, Jensen AB, Jacobsen E, Krasnik M,
Johansen C: Psychosocial aspects of lung can-
cer. Lung Cancer 2005;
47: 293–300.
26 Montazeri A, Milroy R, Hole D, McEwen J,
Gillis CR: Quality of life in lung cancer pa-
tients: as an important prognostic factor.
Lung Cancer 2001;
31: 233–240.
27 Hopwood P, Stephens RJ: Depression in pa-
ti
ents with lung cancer: prevalence and risk
fac
tors derived from quality-of-life data. J
Clin Oncol 2000;
18: 893–903.
28 Gonzalez BD, Jacobsen PB: Depression in lung
cancer patients: the role of perceived stigma.
Psychooncology 2012;
21: 239–246.
29 Hopwood P, Stephens RJ: Symptoms at presen-
tation for treatment in patients with lung can-
cer: implications for the evaluation of pallia-
tive treatment. The Medical Research Council
(MRC) Lung Cancer Working Party. Br J Can-
cer 1995;
71: 633–636.
30 Cooley ME: Symptoms in adults with lung
cancer. A systematic research review. J Pain
Symptom Manage 2000;
19: 137–153.
31 Degner LF, Sloan JA: Symptom distress in
newly diagnosed ambulatory cancer patients
and as a predictor of survival in lung cancer. J
Pain Symptom Manage 1995;
10: 423–431.
32 Sarna L, Brecht ML: Dimensions of symptom
distress in women with advanced lung can-
cer: a factor analysis. Heart Lung 1997;
26:
23–30.
33 Gift AG, Jablonski A, Stommel M, Given CW:
Symptom clusters in elderly patients with
lung cancer. Oncol Nurs Forum 2004;
31: 202–
212.
34 Vainio A, Auvinen A: Prevalence of symptoms
among patients with advanced cancer: an in-
ternational collaborative study. J Pain Symp-
tom Manage 1996;
12: 3–10.
35 Chiu TY, Hu WY, Chen CY: Prevalence and
severity of symptoms in terminal cancer pa-
tients: a study in Taiwan. Support Care Can-
cer 2000;
8: 311–313.
36 Brown ML, Carrieri V, Janson-Bjerklie, Dodd
MJ: Lung cancer and dyspnea: the patient’s per-
ception. Oncol Nurs Forum 1986;
13: 19–24.
37 Perez-Soler R, Chachoua A, Hammond LA,
Rowinsky EK, Huberman M, Karp D, Rigas J,
Clark GM, Santabárbara P, Bonomi P: Deter-
minants of tumor response and survival with
erlotinib in patients with non-small-cell lung
cancer. J Clin Oncol 2004;
22: 3238–3247.
38 Claessens MT, Lynn J, Zhong Z, Desbiens
NA, Phillips RS, Wu AW, Harrell FE Jr, Con-
nors AF Jr: Dying with lung cancer or chron-
ic obstructive pulmonary disease: insights
from SUPPORT. Study to Understand Prog-
noses and Preferences for Outcomes and
Risks of Treatments. J Am Geriatr Soc 2000;
48(5 suppl):S146–S153.
39 McCarthy EP, Phillips RS, Zhong Z, Drews
RE, Lynn J: Dying with cancer: patients’ func-
tion, symptoms, and care preferences as
death approaches. J Am Geriatr Soc 2000;
48(5 suppl):S110–S121.
40 Fox SW, Lyon DE: Symptom clusters and
quality of life in survivors of lung cancer. On-
col Nurs Forum 2006;
33: 931–936.
41 Davidson JR, MacLean AW, Brundage MD,
Schulze K: Sleep disturbance in cancer pa-
tients. Soc Sci Med 2002;
54: 1309–1321.
42 Silberfarb PM, Hauri PJ, Oxman TE, Schnurr
P: Assessment of sleep in patients with lung
cancer and breast cancer. J Clin Oncol 1993;
11: 997–1004.
43 Lebel S, Devins GM: Stigma in cancer patients
whose behavior may have contributed to their
disease. Future Oncol 2008;
4: 717–733.
44 Faller H, Schilling S, Lang H: Causal attribu-
tion and adaptation among lung cancer pa-
tients. J Psychosom Res 1995;
39: 619–627.
45 Cantrell M, Lupinacci P: Methodological is-
sues in online data collection. J Adv Nurs 2007;
60: 544–549.
46 Spielberger C, Gorsuch R, Suchene R, et al:
Manual for the State-Anxiety Inventory (Form
Y): Self-Evaluation Questionnaire. Palo Alto,
Consulting Psychologists Press, 1983.
47 Hoover D, Saah A, Bacellar H, Murphy R,
Visscher B, Anderson R, Kaslow RA: Signs
and symptoms of ‘asymptomatic’ HIV-1 in-
fection in homosexual men. Multicenter
AIDS Cohort Study. J Acquir Immune Defic
Syndr 1993;
6: 66–71.
48 Hollen PJ, Gralla RJ, Kris MG, McCoy S, Don-
aldson GW, Moinpour CM: A comparison of
visual analogue and numerical rating scale
formats for the Lung Cancer Symptom Scale
(LCSS): does format affect patient ratings of
symptoms and quality of life? Qual Life Res
2005;
14: 837–847.
49 Jones L, Watson BM: Developments in health
communication in the 21st century. J Lang
Soc Psychol 2012;
31: 415–436.
50 Malta M, Todd CS, Stibich MA, Garcia T, Pa-
checo D, Bastos FI: Patient-provider commu-
nication and reproductive health among
HIV-positive women in Rio de Janeiro, Brazil.
Patient Educ Couns 2010;
81: 476–482.
51 Reichert E: Reducing stigma barriers to help-
seeking behaviors among college students.
Psychology 2012;
3: 892–898.
52 Braybrook DE, Witty KR, Robertson S: Men
and lung cancer: a review of the barriers and
facilitators to male engagement in symptom
reporting and screening. J Mens Health 2011;
8: 93–99.
53 Corner J, Hopkinson J, Roffe L: Experience of
health changes and reasons for delay in seek-
ingcare: a UK study of the months prior to the
diagnosis of lung cancer. Soc Sci Med 2006;
62:
1381–1391.
54 Tod AM, Craven J, Allmark P: Diagnostic de-
lay in lung cancer: a qualitative study. J Adv
Nurs 2008;
61: 336–343.
55 Unger M: A pause, progress, and reassessment
in lung cancer screening. N Engl J Med 2006;
355: 1822–1824.
56 Sun S, Schiller JH, Gazdar AF: Lung cancer in
never smokers – a different disease. Nature
Reviews Cancer 2007;
7: 778–790.
57 Cataldo JK: Lung cancer stigma and symptom
burden. Proceedings of the 14th World Confer-
ence on Lung Cancer, Amsterdam, July 2011.
58 Nelson JE, Gay EB, Berman AR, Powell CA,
Salazar-Schicchi J, Wisnivesky JP: Patients rate
physician communication about lung cancer.
Cancer 2011;
117: 5212–5220.
59 Hickman R, Clochesy J, Gittner L: Electronic
Self-Management Resource Training (eSMART)
to Enhance Self-Management and Communica-
tion Among Adults with Chronic Health Condi-
tions. Cleveland, Health Communication and
Technology, Case Western Reserve University,
2011.
60 Zolnierek KBH, DiMatteo MR: Physician com-
munication and patient adherence to treat-
ment: a meta-analysis. Med Care 2009;
47: 826.
61 Griffin JP, Koch KA, Nelson JE, Cooley ME;
American College of Chest Physicians: Pallia-
tive care consultation, quality-of-life mea-
surements, and bereavement for end-of-life
care in patients with lung cancer: ACCP evi-
dence-based clinical practice guidelines (2nd
edition). Chest 2007;
132(3 suppl):404S–422S.
62 Link BG, Phelan JC: Stigma and its public
health implications. Lancet 2006;
367: 528–529.
63 Gordon EJ, Prohaska TR, Gallant M, Simi-
noff LA: Self-care strategies and barriers
among kidney transplant recipients: a quali-
tative study. Chronic Illn 2009;
5: 75–91.
64 Wei X, Barnsley J, Zakus D, Cockerill R, Gla-
zier R, Sun X: Evaluation of a diabetes man-
agement program in China demonstrated as-
sociation of improved continuity of care with
clinical outcomes. J Clin Epidemiol 2008;
61:
932–939.
Downloaded by:
UCSF Library & CKM
132.174.255.215 - 1/10/2014 2:25:19 AM
    • "To date, research examining stigma following cancer has predominately focused on identifying how stigma manifests in different types of cancers (e.g., lung, cervical, colorectal, head and neck) and how stigma is attributed to persons who are marked/labelled with a cancer diagnosis [16, 18,[23][24][25][26][27][28][29][30]. This has led to an overarching conceptualization of stigma in cancer as either blame or shame–blame or shame for having participated in behaviors (e.g., smoking, unprotected sexual activities) perceived to be associated with cancer. "
    [Show abstract] [Hide abstract] ABSTRACT: Purpose Stigma and workplace discrimination have been identified as prominent challenges to employment following cancer. However, there has been limited examination of how stigma develops in work contexts and how it influences cancer survivors’ return to work process and their disclosure decisions. Methods In the broader study from which this paper emerges, we used an exploratory qualitative design to examine the return to work process (including workplace supports and accommodations) of cancer survivors. We conducted 40 semi-structured interviews with (i) cancer survivors (n = 16), (ii) health care/vocational service providers (n = 16), and (iii) employer representatives (n = 8). We used thematic analysis methods to analyze the data. In this paper, we present data related specifically to workplace stigma, discrimination, and disclosure. Results Contrasting perspectives were identified among our stakeholder groups regarding the existence and impact of stigma in the workplace. While most provider and employer representatives believed survivors were not likely to be stigmatized, cancer survivors themselves perceived cancer as a highly stigmatized illness in the workplace. Two inter-related elements were implicated in the development of workplace stigma following cancer: (1) ongoing misconceptions and fears associating cancer with death and (2) misperceptions regarding impacts on the workplace, including survivors’ work abilities, productivity, reliability, the costs associated with their continued employment (e.g., workplace accommodations), and future impacts on the workplace related to cancer re-occurrence. Discriminatory behaviors, such as hiring discrimination, bullying, harassment, refusal of workplace accommodations, and limited career advancement opportunities, were also discussed. A supportive workplace, a desire to be open with co-workers, and a need to request supports and manage expectations were reasons provided for disclosure. Conversely, an unsupportive workplace, fear of discrimination, and a minimal need for assistance were reasons provided for not disclosing their cancer. Conclusions Stigma and workplace discrimination are significant concerns for cancer survivors. Anti-stigma programs should target ongoing myths regarding cancer and survivors’ right to work, work abilities and productivity, and incorporate survivors’ voices to enhance understanding. Survivors, health care providers, vocational service providers, and employers should become familiar with anti-discrimination legislation and recognize stigma and discriminatory behaviors when they occur. Implications for Cancer Survivors Survivors require guidance to decide whether (or not) to disclose their cancer, how to respond to discriminatory behaviors, and how to best state their needs for workplace accommodations.
    Article · May 2016
    • "Supporting the extant literature on blame and stigma in lung cancer patients, most participants in our study of lung cancer survivors, regardless of smoking status, reported experiencing blame and stigma related to their lung cancer diagnosis (Brown & Cataldo, 2013; Brown Johnson et al., 2014; Cataldo & Brodsky, 2013; Chambers et al., 2012; Chapple et al., 2004; Else-Quest et al., 2009; Hamann et al., 2014; LoConte et al., 2008 ). In addition to voicing their personal difficulties with coping with the stigma, participants expressed beliefs that this stigma translated into a lack of public empathy and support for lung cancer as a disease worthy of devoting resources to on a large scale. "
    [Show abstract] [Hide abstract] ABSTRACT: While lung cancer is the deadliest type of cancer, survival rates are improving. To address the dearth of literature about the concerns of lung cancer survivors, we conducted 21 in-depth interviews with lung cancer survivors that focused on experiences during diagnosis, treatment, and long-term survivorship. Emergent themes included: feeling blamed for having caused their cancer, being stigmatized as "throwaways," and long-term survivors' experiencing surprise that they're still alive, given poor overall survival rates. Finally, survivors desired increased public support. It is imperative for healthcare and public health professionals to learn more about needs of this population.
    Full-text · Article · Jan 2016
    • "Whether such methods would have a positive effect on mitigating the implicit biases associated with lung cancer is unknown. Previous studies of shame and stigma associated with lung cancer have observed that lung cancer stigma can have significant effects on treatment decisions and how patients perceive the severity of their symptoms [3,6]. In this study, both descriptive and implicit measures observed greater levels of shame and stigma associated with lung cancer compared with breast cancer. "
    [Show abstract] [Hide abstract] ABSTRACT: Societal perceptions may factor into the high rates of nontreatment in patients with lung cancer. To determine whether bias exists toward lung cancer, a study using the Implicit Association Test method of inferring subconscious attitudes and stereotypes from participant reaction times to visual cues was initiated. Participants were primarily recruited from an online survey panel based on US census data. Explicit attitudes regarding lung and breast cancer were derived from participants' ratings (n = 1778) regarding what they thought patients experienced in terms of guilt, shame, and hope (descriptive statements) and from participants' opinions regarding whether patients ought to experience such feelings (normative statements). Participants' responses to descriptive and normative statements about lung cancer were compared with responses to statements about breast cancer. Analyses of responses revealed that the participants were more likely to agree with negative descriptive and normative statements about lung cancer than breast cancer (P<0.001). Furthermore, participants had significantly stronger implicit negative associations with lung cancer compared with breast cancer; mean response times in the lung cancer/negative conditions were significantly shorter than in the lung cancer/positive conditions (P<0.001). Patients, caregivers, healthcare providers, and members of the general public had comparable levels of negative implicit attitudes toward lung cancer. These results show that lung cancer was stigmatized by patients, caregivers, healthcare professionals, and the general public. Further research is needed to investigate whether implicit and explicit attitudes and stereotypes affect patient care.
    Full-text · Article · Dec 2015
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