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Quality of Life and Meaning of Illness of Women
With Lung Cancer
Linda Sarna, DNSc, RN, FAAN, Jean K. Brown, PhD, RN, FAAN,
Mary E. Cooley, PhD, CRNP, CS, Roma D. Williams, PhD, CRNP,
Cynthia Chernecky, PhD, RN, Geraldine Padilla, PhD, and Leda Layo Danao, PhD
Key Points . . .
Purpose/Objectives: To describe the quality of life (QOL) of women
with non-small cell lung cancer (NSCLC) and examine relationships
of demographic, clinical, health status, and meaning of illness (MOI)
Lung cancer has been the leading cause of cancer death for
characteristics to QOL.
women since 1987; however, information guiding assessment
Design: Descriptive, cross-sectional survey.
and interventions to support quality of life (QOL) is limited.
Setting: In-person interviews in homes or research offices.
Sample: 217 women with NSCLC (> 6 months and < 5 years since
Most women reported numerous serious disruptions in psy-
--
diagnosis, X = 2 years); 19% of the women had advanced disease. The
chological and social well-being and viewed their illness as a
mean age was 65 years.
challenge.
Methods: Assessments of QOL with cancer-specific (QOL Scale-
Depressed mood, negative conceptualizations of the meaning
Patient Version) and generic (Short Form-36) self-reports, health status
of illness, and younger age were predictive of poorer global,
(i.e., number and type of comorbid conditions, presence of depressed
physical, psychological, and social QOL.
mood using the Center for Epidemiologic Studies­Depression Scale,
smoking status), and MOI (positive and negative perceptions).
The number of comorbid conditions, with the most common
Main Research Variables: QOL, health status, MOI, and demographic
being chronic obstructive pulmonary disease, was related di-
and clinical characteristics.
rectly to physical QOL.
Findings: Serious disruptions in psychological and social aspects of
QOL were common. Depressed mood, negative conceptualizations of
MOI, and younger age explained 37% of the variance of global QOL and
were correlated with poorer physical, psychological, and social dimen-
sions of QOL. Thirty-six percent reported negative ascriptions of MOI;
35% experienced depressed mood; more than 75% reported distress
Linda Sarna, DNSc, RN, FAAN, is a professor in the School of Nursing
with their diagnosis, family distress, and impact of sexual function as
at the University of California, Los Angeles (UCLA); Jean K. Brown,
lowering their QOL; and 67% reported comorbid conditions, the most
PhD, RN, FAAN, is an associate professor and associate dean for
common being chronic obstructive pulmonary disease (31%).
academic affairs in the School of Nursing at the University at Buffalo,
Conclusions: Women with lung cancer experience a range of disrup-
State University of New York; Mary E. Cooley, PhD, CRNP, CS, is a
tions in QOL, and more than a third associate lung cancer with negative
nurse scientist in the Phyllis F. Cantor Center for Research in Nurs-
meaning. Younger age, depressed mood, and number of comorbid
ing and Patient Care Services at the Dana-Farber Cancer Institute in
diseases are risk factors for negative QOL.
Boston, MA; Roma D. Williams, PhD, CRNP, is a retired associate
Implications for Nursing: These findings support the importance of
professor in the School of Nursing at the University of Alabama in Bir-
assessing the QOL, MOI, and health status of women with lung cancer
mingham; Cynthia Chernecky, PhD, RN, is a professor in the School
even after treatment is completed. Younger women may be at higher
of Nursing at the Medical College of Georgia in Augusta; Geraldine
risk for disruptions.
Padilla, PhD, is a professor and associate dean for research in the
School of Nursing at the University of California, San Francisco; and
Leda Layo Danao, PhD, is a project director in the School of Nursing
I
at UCLA. This research was supported by the ONS Foundation Center
nformation about patients' quality of life (QOL) can be
for Leadership, Information and Research (#018652). (Submitted July
important to healthcare providers in identifying anticipat-
2004. Accepted for publication September 17, 2004.)
ed areas of distress (Montazeri, Milroy, Hole, McEwen,
& Gillis, 2003). Despite the incidence of lung cancer among
Digital Object Identifier: 10.1188/05.ONF.E9-E19
ONCOLOGY NURSING FORUM ­ VOL 32, NO 1, 2005
E9
Clinical Characteristics
women, information about the QOL of women living with
this disease is limited. Lung cancer has been the major cause
Lung cancer characteristics, especially metastasis, may
of cancer-related death and morbidity in women, surpassing
affect QOL (Montazeri et al., 1998). These disease-related
breast cancer in 1987, and rates continue to increase (Patel,
variables may be different for women compared to men. For
Bach, & Kris, 2004). In 2004, lung cancer accounted for 25%
example, women often are diagnosed after a shorter history
of all female cancer deaths--more deaths than breast, ovarian,
of smoking, have less tobacco-related comorbidity, and have
and uterine cancers combined (Centers for Disease Control
increased incidence of adenocarcinoma histology (Ouellette,
and Prevention [CDC], 2002a, 2002b; Jemal et al., 2004).
Desbiens, Emond, & Beauchamp, 1998; Patel et al., 2004).
Disturbing evidence from a recent lung cancer screening trial
Lung cancer generally is diagnosed at an advanced stage, and
suggests that women who smoke are more susceptible to lung
overall survival mirrors the stage of disease at diagnosis; for
cancer than men (Henschke & Miettinen, 2004); therefore,
example, if in an advanced stage at diagnosis, African Ameri-
as incidence increases, obtaining information about QOL in
can and Caucasian women have a 13.5% and 16.6% five-year
women with lung cancer is essential in devising interventions
survival, respectively, whereas 16% of all women diagnosed
to prevent or reduce distress.
with localized disease have a 52.5% survival rate (Ries et
al., 2000). The presence of metastatic disease is associated
Literature Review
with increased symptoms and decreased QOL (Cooley, 1998;
Cooley, Short, & Moriarty, 2002; Sarna, 1993a). Although
Quality of Life and Lung Cancer
side effects of treatment may decrease QOL in the short term,
QOL is a multidimensional phenomenon that can be influ-
the positive benefits in the long term may improve QOL. In
enced by the experience of living with lung cancer (Cooley,
addition, length of time since diagnosis may affect QOL
1998; Gralla & Moinpour, 1995; Zieren, Muller, Hamberger,
because survivors adjust to living with a chronic disease
& Pichlmaier, 1996). The experience of living with a po-
(Maliski, Sarna, Evangelista, & Padilla, 2003).
tentially fatal illness such as lung cancer can have negative
and positive influences on physical, psychological, social,
Demographic Characteristics
and spiritual dimensions of daily living (Zebrack, 2000). In
A variety of demographic characteristics have been linked
comparison with patients with other cancer types, patients with
with QOL and lung cancer. Previous study findings of QOL in
lung cancer report the greatest amount of psychological distress
women with lung cancer (Sarna, 1993b) indicate that signifi-
(Zabora, BrintzenhofeSzoc, Curbow, Hooker, & Piantadosi,
cantly greater disruptions occurred in younger women. In ad-
2001). Disruptions in QOL are important to monitor during the
dition, being married has been linked with better QOL among
entire continuum of the disease, from diagnosis to treatment,
patients with lung cancer (Ganz, Lee, & Siau, 1991), but this
during recovery and rehabilitation, and living with advanced-
relationship was not supported in a report of disease-free lung
stage disease. Although QOL data frequently are obtained in
cancer survivors (Sarna et al., 2002). Differences in race have
clinical trials for advanced lung cancer, information is limited
been reported with higher QOL among non-Caucasian lung
about QOL after the initial diagnosis and treatment when in-
cancer survivors (Sarna et al.).
dividuals continue to live with the disease and are faced with
the possibility of recurrence and metastasis. Few researchers
Health Status
have reported QOL during the postoperative phase or among
In addition to a cancer diagnosis, chronic physical and mental
long-term survivors (Dales et al., 1994; Mangione et al., 1997;
illnesses have the potential to affect all aspects of QOL; how-
Montazeri, Gillis, & McEwen, 1998; Sarna et al., 2002).
ever, they rarely are reported in QOL studies of people with
Data from female survivors of cancer indicate that women
cancer. In 60 women with advanced non-small cell lung cancer
have significantly poorer scores on physical, psychological,
(NSCLC), comorbid disease was associated with more severe
and social components of QOL but higher ratings of spiritual
symptoms (Sarna & Brecht, 1997). Although not all women
well-being (Ferrell, Dow, Leigh, Ly, & Gulasekaram, 1995).
with lung cancer have a history of smoking, tobacco-induced
The QOL and demands of illness experienced by women with
comorbidity may be more common among those affected with
lung cancer may be different than men because of competing
this disease (Tammemagi, Neslund-Dudas, Simoff, & Kvale,
household, childcare, and other role-related demands (Sarna,
2004). Including lung cancer, almost 9 million Americans were
1993a, 1993b). In the only known study specifically focused on
affected by tobacco-attributed conditions in 2002 (CDC, 2003).
the QOL of women with lung cancer, the most common serious
Among current and former smokers, these chronic conditions in-
disruptions were fatigue, difficulty in household chores, and
clude chronic bronchitis (35%), emphysema (24%), heart attack
worry about the ability to care for oneself (Sarna, 1993b).
(19%), other cancers (12%), and stroke (8%) (CDC, 2003).
A variety of factors affecting the QOL of patients with
Self-reported depressed mood has the potential to affect
lung cancer have been suggested, including clinical, demo-
evaluations of QOL. Passik et al. (1998) suggested that health-
graphic, and health status characteristics. The meaning of
care professionals underestimate depression among people
illness (MOI) also has been suggested to influence the way
with cancer, which affects an estimated 25%. Depression has
that women with cancer perceive their QOL (Degner, Hack,
been reported among patients diagnosed with lung cancer,
O'Neil, & Kristjanson, 2003; Wallberg et al., 2003). To date,
especially those with advanced-stage disease, at rates higher
MOI has not been explored in women with lung cancer. In
than the general population (Ginsburg, Quirt, Ginsburg, &
part because of the stigma (Chapple, Ziebland, & McPher-
MacKillop, 1995; Hopwood & Stephens, 2000; Montazeri
son, 2004) and the disease severity of lung cancer, negative
et al., 1998), and has been linked to decreased survival (Buc-
conceptualizations of illness may be more likely in women
cheri, 1998; Faller, Bulzebruck, Drings, & Lang, 1999; Ganz
with lung cancer than women with breast cancer and may be
et al., 1991). Akechi, Okamura, Nishiwaki, and Uchitomi
negatively related to QOL.
ONCOLOGY NURSING FORUM ­ VOL 32, NO 1, 2005
E10
(2001) reported that psychiatric disorders among 129 patients
In this study, the researchers hypothesized that women with
with unresectable NSCLC included nicotine dependence
negative connotations of MOI, poorer health status (comorbid
(67%) and major depression (5%). Women with NSCLC
disease, depressed mood, current smoking), and metastatic
reported more psychological symptoms than men (Hopwood
disease would have lower ratings of QOL.
& Stephens, 1995). Even among survivors of NSCLC, depres-
Methods
sion has been reported. Uchitomi et al. (2000) found that 6%
of 223 patients with NSCLC had minor or major depression
Design
three months after thoracotomy. Sarna et al. (2002) reported
that 22% of disease-free survivors had depressed mood.
A prospective, cross-sectional, descriptive design was used
Former and continued tobacco use has the potential to af-
to describe the QOL of women who had been diagnosed with
fect multiple aspects of QOL after a diagnosis of cancer. A
NSCLC. To enhance the generalizability of the findings, data
diagnosis of lung cancer can be a strong motivation to quit
collection sites in the western, eastern, and southern regions
smoking, and in comparison to other smokers, individuals
of the United States were selected for recruitment of women
with lung cancer have been reported to have increased quit
from a range of socioeconomically, ethnically, and geographi-
rates (Cox, Patten, et al., 2002; Cox, Sloan, et al., 2002).
cally diverse populations. The study was approved by the
Women with lung cancer appear to have even higher quit
institutional review board at the University of California, Los
rates than men with lung cancer (Gritz, Nisenbaum, Elashoff,
Angeles, and at each of the participating institutions (Yale
& Holmes, 1991).
University; University of Alabama at Birmingham; University
at Buffalo, State University of New York; Medical College of
Meaning of Illness
Georgia). Multiple clinical sites were used for recruitment
The positive or negative attribution of a cancer diagnosis
within each region. To ensure compliance with the standard
has been postulated to be an important factor influencing
procedure, the principal investigator visited each site and
QOL (Degner et al., 2003). Degner et al. developed an MOI
facilitated communication among the team with techniques
instrument, which was tested in a study of 1,012 Canadian
described by Cooley et al. (2003), including frequent confer-
women with breast cancer. In that study, the majority of the
ence calls, e-mails, and a newsletter.
participants selected categories associated with positive MOI.
Sample and Setting
Those who selected negative MOI were more likely to have
late-stage disease, be younger, and have poorer emotional
Women were eligible to participate if they had been diag-
well-being. No differences were found in time since diagnosis,
nosed at least six months and less than five years prior to study
type of treatment, or level of education. Minimal change was
entry. This lag time after diagnosis was purposeful in that it
reported in ascriptions of MOI in a three-year follow-up.
allowed the researchers to focus on the range of experiences of
women living with lung cancer, including the recovery period
Conceptual Framework
after active treatment. Only women with a histologically or
cytologically proven diagnosis of NSCLC, as verified by the
A multidimensional QOL framework, including physical,
treating physician, tumor registry, or medical record, were
psychological, social, and spiritual dimensions, provided the
eligible to participate. Women who had experienced a recur-
conceptual underpinnings for this study (Ferrell, Dow, &
rence of lung cancer or a second primary lung cancer were
Grant, 1995). QOL was viewed as dynamic and influenced
eligible. Exclusion criteria included diagnosis with small cell
by the experience of living with lung cancer (Gralla & Moin-
lung cancer or other types of cancer involving the lung (e.g.,
pour, 1995; Zieren et al., 1996). In this study, demographic
mesothelioma, lung metastasis, carcinoid).
and clinical characteristics, health status (comorbid disease,
In total, 353 women were screened for study participation.
depressed mood, tobacco use), and MOI were hypothesized
Of these, 313 (89% of those screened) were eligible, and 231
as factors that might influence perceptions of QOL.
(74% of those eligible) agreed to participate; 217 completed
data for the outcome variables and therefore are the subjects
Purpose
of this report.
Instruments
The purposes of this article are to (a) describe the QOL
among women living with a diagnosis of NSCLC, (b) describe
Quality of life: QOL was assessed by a cancer-specific and
the ascriptions of MOI, and (c) explore the demographic,
a generic QOL instrument. This allowed the researchers to
clinical, health status, and MOI correlates of QOL. This article
compare the findings with those of other patients with cancer;
reports baseline data from a prospective six-month study. The
because some of the participants potentially were cured of
following research questions were addressed.
their cancer, a measure was used that allowed for comparison
· What is the QOL of women after a diagnosis of lung can-
of the findings with the general population of women with
cer?
chronic illness. The 41-item QOL Scale­Patient Version
· What are the health status characteristics (number of co-
(QOL-Patient) was used as a cancer-specific measure of
morbid conditions, depressed mood, tobacco use) of women
QOL (Ferrell & Dow, 1997; Ferrell, Dow, & Grant, 1995).
with lung cancer?
Sarna et al. (2002) validated this instrument in a population
· What meaning do women attribute to their lung cancer
of lung cancer survivors. Participants responded to questions
diagnosis?
based on their experience of how cancer affected their QOL
· Controlling for time since diagnosis, to what extent are de-
(i.e., "based on your life at this time"). Individual items use
mographic, clinical, health status, and MOI characteristics
a Likert-type scale ranging from 0­10 and are comprised of
related to QOL?
four subscales (physical, social, psychological, and spiritual
ONCOLOGY NURSING FORUM ­ VOL 32, NO 1, 2005
E11
well-being). The QOL-Patient total score (average across all
formed at the time of the interview using a urine sample and
items) and the four QOL-Patient subscale scores were used
cotinine dipstick (Nicometer, Jant Pharmacal Corporation,
as outcomes. Possible subscale scores range from 0­10.
Ventura, CA) to confirm reliability of the self-report (Parker et
Transformations were performed on items such that higher
al., 2002; SRNT Subcommittee on Biochemical Verification,
scores indicate better QOL for all of the items. The reliability
2002). Patients who reported not smoking were reclassified as
(Cronbach's alpha) for this sample ranged from 0.71­0.91 for
smokers if they scored positive for cotinine (i.e., 2 or higher
all subscales and for the global score.
out of 6) on the dipstick.
The multidimensional Short Form-36 Item (SF-36) Rand
Depressed mood was considered a comorbid condition
and assessed using the Center for Epidemiologic Stud-
Version 1.0 was used as a generic measure of QOL (Hays
ies­Depression Scale (CES-D) (Lewisohn, Seeley, Roberts,
& Morales, 2001). This 36-item self-report evaluates eight
concepts (physical functioning, bodily pain, role limitations
& Allen, 1997; Radloff, 1977; Radloff & Teri, 1986). Total
caused by physical health, role limitations caused by emo-
scores range from 0­60, with scores greater than 15 indicat-
tional problems, emotional well-being, social functioning,
ing potential depression. This instrument has been used to
vitality and fatigue, and general health perceptions). The time
evaluate depressive symptoms in patients with cancer (Hann,
frame for all items is within the past four weeks. Using scores
Winter, & Jacobsen, 1999) and has acceptable reliability and
from individual scales, a physical component score (PCS)
validity. Discrimination between healthy and clinical samples
from physical functioning, role-physical, bodily pain, and
has been reported (Lewisohn et al.). A cut-off point for the
general health scales and a mental component score (MCS)
CES-D score was used to group women with (i.e., scores > 16)
from vitality, social functioning, role-emotional, and mental
and without (scores < 16) depressed mood. This dichotomous
health scales were determined. These standardized scores
grouping was used in the analysis rather than the total score
range from 0­100, with higher scores indicating better QOL.
because of the overlap of some items in the CES-D with items
These summary measures can be compared with percentile
in the QOL instruments. The Cronbach's alpha for the CES-D
scores for the general female population (Ware, Kosinski, &
in this sample was 0.87.
Demographic and clinical variables: Demographic data
Dewey, 2000; Ware, Kosinski, & Keller, 1994). The SF-36 has
well-established reliability and validity and has been reported
(i.e., age, marital status, race or ethnicity, educational level,
to be sensitive to changes after thoracic surgery for NSCLC
employment status, living arrangements) were collected on a
(Mangione et al., 1997). Cronbach's alpha coefficient of the
self-report survey. Height and weight (with participants fully
SF-36 for this study was 0.95.
clothed) were measured at the time of the interview using a
Meaning of illness: MOI was assessed according to Deg-
standardized protocol, and body mass index (i.e., weight in
ner et al.'s (2003) description. Eight cards with individual
kilograms divided by height in meters2) was calculated because
statements describing illness as positive (i.e., a challenge or
weight can be affected by disease and treatment (Evangelista,
a value), negative (i.e., an enemy, a terrible loss that can not
Sarna, Brecht, Padilla, & Chen, 2003). Height was measured
be replaced, a punishment, or a weakness), or other meaning
using a metal ruler (Stanley Model 33-158, New Britain, CT) at
(i.e., relief, strategy, or write-in comments) were placed all
baseline. Weight was assessed using an electronic strain gauge
at once before the participant. Each woman was asked to
scale with a digital reading. Body mass index was considered
select the card that best matched her view of her illness. This
a continuous variable and categorized in quartiles (20, 20­25,
instrument has been used to evaluate perceptions of illness in
26­30, and > 30). Patients with a body mass index of 26 or
women with cancer (Wallberg et al., 2003). Comparisons of
more were considered overweight, and more than 30 were con-
positive and negative response categories across a six-month
sidered obese (Flegal, Carrol, Kuczmarski, & Johnson, 1998).
data collection period for this sample of women with lung
Clinical characteristics assessed via the medical record in-
cancer revealed that this was a stable and reliable measure.
cluded the NSCLC histology, stage of disease at diagnosis, time
Percent agreement was 79%, 77%, and 84% for positive MOI
since diagnosis, and type and extent of treatment. Because of
categories and 63%, 59%, and 62% for negative MOI catego-
potential changes in disease status since initial diagnosis, inves-
ries (kappa < 0.001) at baseline to three months, three months
tigators evaluated the extent of disease at the interview as local
to six months, and baseline to six months, respectively.
(stage 1), regional (presence of lymph nodes, stage II or III), or
Health status: Health status was evaluated in several ways.
advanced (presence of metastasis, stage IV) based on medical
The presence of comorbid diseases was assessed by a valid
information and self-report. For women who had undergone
and reliable self-report using a list of conditions from the well-
surgical treatment, the extent of surgery was described. The
established Charlson Comorbidity Index (Charlson, Pompei,
presence and type (chemotherapy, radiation therapy) of current
Ales, & MacKenzie, 1987; Elixhauser, Steiner, Harris, & Cof-
treatment status also were assessed.
fey, 1998; Katz, Chang, Sangha, Fossel, & Bates, 1996). In this
Procedure
article, the frequency of specific conditions is described and the
total number of conditions was used in the analysis. This pro-
Potential participants were recruited via materials approved
cedure was used in a study of survivors of lung cancer (Sarna
by the institutional review board, including letters, flyers in
et al., 2002) and a study of the impact of comorbid conditions
oncology offices, and advertisements. Several strategies were
on lung cancer survival (Tammemagi et al., 2004).
used for recruitment, including identification of potential par-
Tobacco history and current smoking status were obtained
ticipants through tumor registries as well as through thoracic
through self-report and biochemical verification. Survey ques-
surgical, medical, and radiation therapy oncology practices.
tions were based on items from the Behavioral Risk Factor
Direct appeals to women with NSCLC through institutional
Survey (CDC, 2000) and the Fagerstrom Test for Nicotine
review board-approved newspaper advertisements and television
Dependence (Fagerstrom, 1978; Fagerstrom & Schneider,
and radio announcements were used at some sites (Cooley et
1989). Biochemical validation of smoking status was per-
al., 2003). A telephone script was used to ensure that consistent
ONCOLOGY NURSING FORUM ­ VOL 32, NO 1, 2005
E12
Table 1. Descriptive Statistics of Demographic and Health
information was provided about the study. Information about
Status Characteristics
the clinical characteristics of lung cancer and its treatment was
obtained from medical records. Interviews occurred in the sub-
--
Characteristic
X
SD
Range
jects' homes or in research offices, and participants were paid
$25 for their time and effort.
Age (years)
65.00
12.00
33.0­89.0
Data Analyses
Years of education
13.00
13.00
16.0­24.0
Number of comorbid diseases
11.38
11.38
10.0­6.0
Analysis included descriptive statistics, as appropriate, to
CES-D
12.97
19.75
10.0­45.0
provide a profile of the sample and variables. To examine the
Body mass index
27.62
16.07
16.7­ 46.4
prevalence of the most serious QOL disruptions (reported by
> 20% of the participants), responses to individual items from
n
%
Characteristic
the QOL-Patient questionnaire rated as stressful (0 with the
124
57
Age (> 65 years)
anchor "most distressing" to 4 on a 10-point scale) were rank
Race
ordered by subscale. Similarities between the scores on the
184
85
Caucasian
generic QOL measure (SF-36 PCS and MCS) and the nor-
123
11
African American
mative values for women aged 55­64 years were examined
113
11
Asian or Pacific Islander
(Ware et al., 2000).
117
13
Other
As a preliminary screen, the bivariate associations of each
Ethinicity
of the potential demographic, clinical, health status, and MOI
113
11
Of Hispanic origin
predictors with QOL outcomes were examined. Analysis of
Geographic location
187
40
East
variance methods or chi-square was used to determine discrete
176
35
West
predictors (e.g., smoking status), and Pearson or Spearman
154
25
South
(rank order) correlations were used for continuous predictors
Religion
(e.g., age).
122
56
Protestant
Variables that were related at least modestly to some of the
167
31
Catholic
QOL subscales in the preliminary analyses were included in
120
19
Jewish
the regression analysis. Stepwise regression, with time since
118
14
Other
diagnosis entered first, was used to examine multivariate
Marital status
models for each of the QOL outcomes (QOL-Patient global
104
48
Married
159
27
score and subscales, and the SF-36 PCS and MCS). Dummy
Widowed
143
20
Separated or divorced
variables for this analysis included demographics (race [non-
111
15
Never married
Caucasian = 0, Caucasian = 1], married or partnered [no or
Living arrangements
yes]) and health status (depressed mood [no = 0, yes = 1], cur-
178
36
Alone
rent smoker [no = 0, yes = 1]), and clinical variables (advanced-
139
64
With others
stage disease [no = 0, yes = 1]). MOI statements were grouped
153
24
Currently employed
as positive or negative (0 = negative, 1 = positive). All statistical
Depressed mood
procedures were conducted at the University of California, Los
176
35
> 16 (CES-D score)
Angeles, according to a schema developed by the investigators
Smoking status
and principal statistician. All questionnaires were reviewed for
160
74
Former
129
13
completeness. A random sample of 20% of the data was double-
Current
128
13
Never
entered and assessed for reliability. Because of the primary focus
on exploration, no statistical adjustment for multiple tests was
N = 217
performed; thus, conservative interpretation is suggested. Statis-
CES-D--Center for Epidemiologic Studies­Depression
tical analysis was carried out using SPSS® (SPSS Inc., Chicago
IL, version 11.5), and alpha was set at 0.05.
Results
to the lung cancer diagnosis. Most of the participants (54%)
were overweight (body mass index > 26), including 30% who
Demographic, Clinical, and Health Status
were obese (body mass index > 30). Eighty-seven percent (n =
Characteristics
189) of the participants had a history of smoking, and 99% of
those women who were smoking at the time of diagnosis (n =
The description of the sample, including demographic and
120) tried to quit at diagnosis, but only 57% were able to do
health status characteristics, is provided in Table 1. The major-
so. Thirty-five percent (n = 76) reported a CES-D score of 16
ity had at least one comorbid condition (n = 146, 67%): 30%
or more, indicating depressed mood. Lung cancer disease and
(n = 64) had only one condition, 18% (n = 38) had two, 11%
treatment characteristics are displayed in Table 2.
(n = 23) had three, and 10% (n = 21) had four to six other ill-
nesses. The most common comorbid conditions were chronic
Quality of Life
obstructive pulmonary disease (n = 68, 31%), heart disease
The mean QOL scores (QOL-Patient scores and SF-36 PCS
(n = 34, 16%), rheumatoid arthritis (n = 34, 16%), asthma (n =
and MCS) are displayed in Table 3. The most distressing QOL
31, 14%), and stomach ulcers (n = 25, 12%). Twenty-four
disruptions reported in each of the QOL-Patient subscales are
(20%) participants reported a history of other cancers: skin
shown in Table 4. At least half of the respondents rated seven
(n = 11), breast (n = 9), colon (n = 3), and cervical (n = 1).
items in the psychological QOL subscale as most distressing.
The majority (76%) of these cancers were diagnosed prior
ONCOLOGY NURSING FORUM ­ VOL 32, NO 1, 2005
E13
Table 2. Descriptive Statistics of Clinical Characteristics
reporting "illness as a challenge" as the best descriptor of
their lung cancer.
Characteristic
n
%
Correlates of Quality of Life
Type of non-small cell lung cancer
Age, race, marital status, presence of metastasis, number
Adenocarcinoma
168
77
of comorbid conditions, current smoking status, depression,
Squamous
127
12
and MOI were found to be related at least modestly to some
Large cell
118
14
of the QOL subscales. Thus, QOL outcomes were regressed
Other
114
16
on these variables using several models. The results of the
Time since diagnosis
--
stepwise regressions, with time since diagnosis as a covariate,
X = 24 months
­
­
are displayed for the QOL-Patient global score, each of the
SD = 16 months
­
­
Range = 6­60 months
­
­
QOL-Patient subscale scores, and the SF-36 PCS and MCS
< 1 year
169
32
in Table 6. Depressed mood, negative MOI, and younger
1­2 years
165
30
age were significant correlates of poorer QOL in most of the
> 2 years
183
38
models. Presence of metastasis contributed to poorer QOL in
Stage at interview
the social subscale, and 37% of the variance in global QOL
Local
105
48
was related to depressed mood, negative conceptualizations
Regional
171
33
of MOI, and younger age.
Advanced (metastasis)
141
19
Surgical treatment
177
82
Discussion
Type of surgery
Lobectomy
129
73
Wedge resection
136
20
The findings of this study provide important information
Pneumonectomy
110
16
about the issues and concerns of women living with lung
Other
112
11
cancer and provide direction for the development of future
Presence of recurrence
125
12
interventions. Women in this study had similar complaints of
Undergoing treatment
128
13
serious fatigue and pain as did disease-free survivors (Sarna
Chemotherapy
124
11
et al., 2002) and women with lung cancer (Sarna, 1993a) in
Radiation
112
11
two other studies. However, in the current study, women with
Chemotherapy and radiation
112
11
lung cancer had substantially more disruptions in psychologi-
cal well-being, especially relative to their distress about their
N = 217
disease and treatment as well as fears about metastasis or
Note. Because of rounding, not all percentages total 100.
recurrence. Moreover, most indicated that the impact of their
disease on sexual functioning and family distress seriously
affected their social well-being. The SF-36 PCS and MCS
In descending order of frequency, these were distress with di-
averages (40.57 and 49.6, respectively) were substantially
agnosis, fear of metastasis, fear of diagnostic tests, distress with
lower than the 50th percentile normative scores for older
treatment, fear of recurrence, anxiety, and fear of second cancer.
adults (PCS = 49.86, MCS =54.34) (Ware et al., 1994), but
In the social subscale, two items were rated distressing by more
they were similar to the physical QOL ratings for male and
than 75%: impact on sexual function and distress with family.
female disease-free survivors (PCS = 41.5) and emotional
Uncertainty was rated as most distressing by the majority of
QOL ratings (MCS = 51.96) (Sarna et al.).
women in the spirituality subscale. No items in the physical
As anticipated, health status was related strongly to
subscale were distressing to the majority of women.
physical QOL. More than two-thirds of the participants had
Meaning of Illness
at least one comorbid condition, and chronic obstructive
pulmonary disease was most prevalent (31%). This might
Table 5 displays the frequency of ascriptions of MOI. Most
be expected in a group where most were former or current
participants (63%) reported positive meanings, with 53%
Table 3. Descriptive Statistics of Quality-of-Life Scores
--
Quality-of-Life Instrument
X
SD
Range
Possible Range
Quality of Life­Survivora
Global score
16.27
11.42
11.53­9.071
0­101
Physical subscale
17.73
11.59
12.00­10.00
0­101
Spiritual subscale
16.48
12.06
11.00­10.00
0­101
Social subscale
16.35
10.35
10.63­10.00
0­101
Psychological subscale
15.57
11.85
10.44­9.561
0­101
Short Form-36a
Mental component score
49.60
10.68
17.47­69.29
0­100
Physical component score
40.57
10.74
14.90­64.59
0 ­100
N = 217
A lower score indicates poorer quality of life.
a
ONCOLOGY NURSING FORUM ­ VOL 32, NO 1, 2005
E14
Table 4. Frequency and Mean Item Scores of Most Distressinga
weight or obese was more than anticipated. Information is
Items on Quality-of-Life Scale­Patient Version Subscales
limited about weight among cancer survivors, but weight loss
is an indication of poor prognosis for patients with advanced
--
Quality-of-Life Subscales
%
X
SD
lung cancer. However, in a sample of long-term lung cancer
b
survivors, 51% were overweight, including 16% in the obese
Psychological well-being
category, with a 7% mean weight gain after diagnosis (Evan-
Distress with diagnosis
76
2.1
2.9
gelista et al., 2003). More study is needed to determine the
Fear of metastasis
69
3.3
2.8
prevalence of being overweight in this population and how
Diagnostic tests
62
3.9
2.6
it affects health status. Being overweight may be a conse-
Distress with treatment
59
3.8
3.4
quence of decreased activity caused by decreased pulmonary
Recurrence
53
4.2
3.6
function or other conditions related to lung cancer and its
Anxiety
51
4.7
2.4
Fear of second cancer
50
4.4
3.6
treatment.
Change in self-concept
40
5.7
3.3
As expected, depressed mood contributed to explanations
Change in appearance
39
5.8
3.3
of poorer psychological well-being. Negative meaning of ill-
Distress since treatment
30
6.3
3.2
ness and younger age also were significant factors related to
Lack of control
23
6.7
3.0
poorer QOL. Thirty-six percent of the women described MOI
Problems with concentration
23
6.5
2.7
in negative terms, which was substantially more than the 12%
Feeling useless
23
6.7
2.7
reported by a sample of women with breast cancer (Degner et
Social well-being
al., 2003). Similar to Degner et al.'s findings, 53% reported
Impact on sexual function
77
4.4
2.3
"challenge" as the single most commonly selected descriptor
Distress with family
77
2.6
2.5
of MOI. Lung cancer may be viewed as a disease associ-
Interfere with activities at home
30
6.2
3.2
Financial burden
28
6.7
3.6
ated with guilt from tobacco use, but only 7% viewed their
Interfere with employment
26
7.2
4.0
diagnosis as a punishment in this study. However, a greater
Feelings of isolation
21
7.6
3.2
percentage (18%) of women with lung cancer, as compared to
Spiritual well-being
the 8% of women with breast cancer, viewed their cancer as
Uncertainty
54
4.5
3.5
an "enemy." Cultural differences may exist in the interpreta-
Spirituality not important
33
6.0
3.9
tions of words and meanings associated with a cancer diag-
Spirituality less important
21
6.8
3.5
nosis (Wallberg et al., 2003). Degner et al. suggested that the
Physical well-being
positive MOI expressed by a majority of women with breast
Sleep disruption
29
7.1
3.0
cancer reflected a determination to fight the disease. This
Fatigue
27
5.9
2.9
same resolve also was seen in the responses of the majority
Pain
22
6.6
2.9
of women with lung cancer in this sample.
N = 217
A qualitative study of 45 patients with lung cancer in the
Most distressing ranged from 0­4 on a 0­10 scale, with 0 being the worst
United Kingdom (no information was given on gender) re-
a
possible.
vealed that many participants reported a stigma and blame
A lower item score indicates poorer quality of life.
associated with lung cancer because of the link of the disease
b
to smoking (Chapple et al., 2004). This was felt by some to
negatively affect their interactions with healthcare profes-
smokers. Despite the fact that the majority had early-stage
sionals and access to care. The current study did not address
disease, more than a third of the participants had depressed
the issues that might have affected MOI. Further exploration
mood. The number of comorbid conditions and depressed
of the psychological mechanisms involved in characterizing
mood was related to lower physical QOL. Other researchers
cancer for patients with lung cancer and the impact of that
also reported possible depression in patients with curative
characterization on overall QOL is needed.
disease (Myrdal, Valtysdottir, Lambe, & Stahle, 2003; Sarna
Similar to findings of lung cancer survivors (Sarna et al.,
et al., 2002; Uchitomi et al., 2000). Additionally, being
2002), being non-Caucasian was correlated with higher levels
unmarried was related to lower functioning in the PCS, and
of spiritual QOL, along with positive MOI. Depressed mood
younger age was related to lower QOL-Patient scores. Sur-
prisingly, none of the clinical variables was significant.
Table 5. Frequency of Attributions of Meaning of Illness
Thirteen percent of the participants continued to smoke, but
smoking status, as reported by others, was not correlated to
Meaning of Illness
n
%
QOL (Myrdal et al., 2003); however, the sample of continu-
ing smokers was small. Almost all of the women who smoked
Positive meaning
137
63
tried to quit at diagnosis. Cessation can reduce lung cancer
A challenge
115
53
recurrence, reduce the risk of second primary disease, and
A value
122
10
Negative meaning
177
36
increase survival, and patients with lung cancer generally
An enemy
140
18
have a higher quit rate than patients with other cancers (Cox,
A loss
116
17
Africano, Tercyak, & Taylor, 2003; Cox, Patten, et al., 2002;
A punishment
114
17
Cox, Sloan, et al., 2002). Even for patients with advanced-
Weakness
117
13
stage disease, cessation can provide psychological as well as
Other meaning
113
11
physical benefits (Garces & Hays, 2003).
Relief
113
11
Although not a significant correlate of QOL in this study,
the number of women who could be categorized as over-
N = 217
ONCOLOGY NURSING FORUM ­ VOL 32, NO 1, 2005
E15
Table 6. Summary of Seven Models Regressing Quality-of-Life Scores on Selected Variables Controlling for Time Since
Diagnosis
Regression Model
t
p
Adjusted R2
F (1, 216)
b
Quality-of-Life Scale­Patient Version
· Global
0.370*
32.649
­0.475
­ Depressed mooda
­­ 8.708
0.001
­0.269
­ Meaning of illnessb
­­4.923
0.001
­0.176
­ Age
­­3.241
0.001
· Social subscale
0.351*
24.385
­ 0.394
­ Depressed mooda
­­7.111
0.001
­0.306
­ Age
­­5.525
0.001
­0.170
­ Meaning of illnessb
­­3.075
0.002
­ 0.154
­ Presence of metastasisc
­­2.798
0.006
· Psychological subscale
0.305*
24.718
­ 0.427
­ Depressed mooda
­­7.447
0.001
­0.237
­ Meaning of illnessb
­­4.135
0.001
­0.175
­ Age
­­3.056
0.003
· Physical subscale
0.251*
15.464
­ 0.347
­ Depressed mooda
­­5.739
0.001
­ 0.176
­ Number of diseases
­­2.881
0.004
­0.134
­ Meaning of illnessb
­­2.227
0.027
­0.201
­ Age
­­3.351
0.001
· Spiritual subscale
0.140*
18.054
­ 0.219
­ Whether Caucasiand
­­3.414
0.001
­0.199
­ Meaning of illnessb
­­3.116
0.002
­ 0.171
­ Depressed mooda
­­2.682
0.008
­ 0.150
­ Age
­­2.333
0.021
Short Form-36
· Mental component score
0.320*
51.823
­ 0.569
­ Depressed mooda
­10.098
0.001
· Physical component score
0.181*
10.573
­ 0.216
­ Depressed mooda
­­3.425
0.001
­ 0.206
­ Number of diseases
­­3.221
0.001
­0.171
­ Meaning of illnessb
­­2.721
0.007
­0.134
­ Marital statuse
­­2.146
0.033
N = 217
* p < 0.0001
Center for Epidemiologic Studies­Depression Scale score: < 16 = 0 (not depressed), > 16 = 1 (depressed)
a
Meaning of illness categories: negative = 0, positive = 1
b
Presence of metastasis: 0 = no metastasis, 1 = metastasis
c
Race: 0 = non-Caucasian, 1 = Caucasian
d
Marital status: 0 = unmarried, 1 = married
e
Note. Independent variables entered in regression were time since diagnosis, marital status, age, race, smoking status, number of comorbid diseases, metastasis,
depressed mood, and meaning of illness.
and older age were related to lower spiritual QOL. The spiri-
chological, and social QOL. This study's sample included
tual and existential aspects of living with a diagnosis of lung
women as young as 33 years. Because no reports of the QOL
cancer deserve further study. The finding that depression is the
concerns specifically address these young women living
strongest predictor of most dimensions of QOL is similar to
with lung cancer, further study is needed. Surprisingly, the
findings in a report of long-term survivors of NSCLC (Sarna
presence of metastatic disease was not a significant correlate
et al.). This study also corroborates the importance of psycho-
of most aspects of QOL. However, the subsample of those
social rather than physical concerns identified as priorities in
with advanced-stage disease was small. The presence of
a study of 80 people newly diagnosed with lung cancer (Hill,
metastasis, along with depressed mood, negative MOI, and
Amir, Muers, Connolly, & Round, 2003). In the current study,
younger age contributed to the model of lower social QOL.
the findings of the power of MOI conceptualizations support
The impact of advanced-stage disease on the social network
those of Degner et al. (2003) and Wallberg et al. (2003) in
is clearly understandable.
which negative conceptualizations of MOI were significant
The larger percentage of women with early-stage disease as
predictors of poorer QOL.
compared to the normal distribution of stage of lung cancer
Demographic characteristics, other than age, did not
limits the generalizability of these findings to women with
clearly define a group at high risk for disruptions in QOL.
lung cancer who have advanced-stage disease. Because the
Younger age was related to lower global, physical, psy-
focus was on women after the initial phase of diagnosis and
ONCOLOGY NURSING FORUM ­ VOL 32, NO 1, 2005
E16
treatment, women who were diagnosed with advanced-stage
This study's findings suggest that assessment of MOI
disease may have been too ill or unwilling to participate. Ad-
provides additional information about the experience of
ditionally, the approved institutional review board sampling
lung cancer among women just as it did among women
strategy as described by Cooley et al. (2003) may have nega-
with breast cancer. Negative conceptualizations of illness
tively affected recruitment of women with more advanced-
can be addressed by exploring feelings about the disease,
stage disease.
including stigmas and perceived blame related to a smoking
This study's hypothesis that women with negative MOI,
history. Helping current or former smokers to understand the
poorer health status, and metastatic disease would have lower
addictive properties of cigarettes as well as the targeting of
QOL scores was supported partially. Depressed mood, MOI,
women by the tobacco industry (U.S. Department of Health
and age consistently were related to global, physical, psycho-
and Human Services, 2001) may be helpful. Patients who
logical, social, and spiritual QOL. Depressed mood was the
never have smoked also report this stigmatization (Chapple
strongest correlate of all aspects of QOL except the spiritual
et al., 2004). Providing opportunities for social support for
subscale. Depressed mood and negative MOI were related to
women with lung cancer to share their stories about the
lower QOL in all dimensions.
meaning and impact of lung cancer and to normalize their
experiences may be important in assessing psychological
Implications
distress. Brief questions to detect negative views may be
one strategy used in screening at-risk patients who require
In this cross-sectional sample, despite the relatively small
additional assessment.
number of participants with advanced-stage disease, many
In conclusion, this study provides important QOL informa-
women with NSCLC had concerns about their QOL and
tion about an understudied group, women with lung cancer.
had symptoms of depression. Assessment of emotional and
Women at particular risk for disruptions in QOL appear to
physical well-being in women with lung cancer needs to
have a depressed mood, a negative view of their illness, and
continue even after treatment is completed. An experimental
comorbid conditions in addition to being younger. To the au-
computer-based intervention to provide education and sup-
thors' knowledge, this is the first study to report the relation-
port for patients newly diagnosed with cancer, including 29
ship between the conceptualization of MOI and appraisals of
patients with lung cancer, demonstrated that intensive tele-
QOL in women with lung cancer. Future research is needed
phone and in-person support over an 18-week period resulted
to profile changes in QOL disruptions during the trajectory
in improved mental health and less depression (Kozachik
of lung cancer and to compare and contrast male and female
et al., 2001; Rawl et al., 2002). In that study, no significant
QOL responses to determine whether different support strate-
gender differences were found, but differences in response
gies are warranted.
to the intervention by diagnostic group were not reported.
Such a proactive support intervention deserves further study
The authors gratefully acknowledge Mary Lynn Brecht, PhD, and David
Elashoff, PhD, for assistance with statistical analysis; Mel Haberman, PhD,
on the long-term consequences of living with lung cancer.
RN, for assistance with the grant application; Ruth McCorkle, PhD, RN,
However, in another report from this study that focused on
FAAN, and Betty Ferrell, PhD, RN, for consultation; and Tonia Ames, RN,
newly diagnosed patients with pain and fatigue, the par-
MSN, Laura Balmer, MS, RN, ANP, Areceli Caldea, RN, MN, Lorraine Evan-
ticipants with lung cancer, in comparison with other newly
gelista, RN, PhD, and Nina Hurley, RN, for assistance with data collection.
diagnosed patients, received the least benefit in symptom
relief (Given et al., 2002). Future studies need to combine
Author Contact: Linda Sarna, DNSc, RN, FAAN, can be reached at
interventions that address symptom and emotional distress
lsarna@sonnet.ucla.edu, with copy to editor at rose_mary@earthlink.
in this population.
net.
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