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RESEARCH ARTICLE

Patients with Advanced

Lung Cancer: Quality of Life
Barbara A. Roces, PhD, MSN, NP, RN and Perception of Dyspnea
Abstract

Dyspnea is a subjective, multidimensional experience of breathing discomfort,

influenced by physiological, psychological, social, and environmental factors, which
includes secondary psychological and behavioral responses and cannot be defined
only by physical objective abnormalities. It has been found to create barriers in daily
life among patients with advanced lung cancer which interferes with physical
activities such as walking, work, and psychological activities such as disposition,
taking pleasure in life, relationship with others, and sleep. A conceptual model of
dyspnea experience within the core of patients with advanced lung cancer may
include attributes of dyspnea occurrence and distress as not only the physiological,
psychological, and environmental, but also the situational existential meaning or
perception of individual suffering from dyspnea. Dyspnea is a symptom that is usually
under-diagnosed and inadequately managed due to lack of recognition or availability
of interventions. The impact of dyspnea management on the quality of life in
advanced lung cancer patients requires more recognition and better quality of care.
Despite the frequency and complexity of this symptom, little research has been
conducted to specifically identify effective treatment in patients with advanced lung
cancer. Thus, it can be hypothesized that quality of life is related to perception of
dyspnea in advanced lung cancer patients; although no published reports have
examined this relationship in this population Further investigations are needed in this
area to assert the total dyspnea experience that could be influential in regards to the
impact of dyspnea management on the quality of life in patients with advanced lung
cancer.

Introduction

yspnea is a common and distressing symptom in patients with lung cancer

D that decreases quality of life (QOL) (Smith et al., 2001) . It has been
acknowledged that this symptom experience consists of several
components, such as intensity, frequency, duration, affective impact(Dodd et al., 2001).
Dyspnea perception can be defined as a subjective, multidimensional experience of
breathing discomfort, influenced by physiological, psychological, social, and
environmental factors (Mularski et al., 2010).
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For lung cancer patients, living with an incurable disease means quality of life, including its subscale components (basic
having to face the idea of dying (Kahana, 2000). function, activity, emotional function, cognitive function,
Loneliness,anxiety and tension have a documented relationship social support, existential needs, perception of care), and
with dyspnea exacerbation (Henoch, Bergman, Gustafsson, levels of dyspnea perception, including its subscale
Gaston-Johansson, & Danielson, 2007). This intensifying components (sense of effort, anxiety, discomfort).
emotional reactions lead to an unpleasant or troublesome feeling, 2) Examine the relationship between relevant demographic
causingstress, worry and anxiety (Henoch et al., 2007). To the lung variables, overall level of quality of life, and overall level of
cancer patient, dyspnea is a constant reminder of how serious the dyspnea perception.
consequences of being stricken by a life threatening disease are. 3) Examine the relationships between relevant demographic
variables, the subscale components of quality of life (basic
Lung cancer is the second most diagnosed cancer and the number function, activity, emotional function, cognitive function,
one cause of death among men and women in the United States. social support, existential needs, and perception of care) and
Patients with advanced lung cancer perceive physical symptoms the subscale components of dyspnea perception (sense of
as weakness and fatigue (Henoch et al., 2007), and distress in effort, anxiety, and discomfort).
relation to his/her perception of the symptom being experienced
(McCorkle and Young, 1978). It also limits activities and produces These address the following research questions in a group of
social isolation (Roberts, Thorne, & Pearson, 1993). Physiological advanced cancer patients in a hospice setting:
impacts such as difficulty in breathing cause distress even in times
of relatively low occurrence, with its physical aspect creating
1) What are relevant demographic variables (age,
distress, a concept denoting physical implications beyond the
race/ethnicity, educational level, relationship status, income
current moment (Tishelman et al., 2005).
level), levels of quality of life, including its subscale
As dyspnea creates a sensation of uncomfortable awareness of components (basic function, activity, emotional function,
breathing, it creates a frightening distressing experience in patients cognitive function, social support, existential needs,
with lung cancer (Pan, Morrison, Leipzig, Ness, & Fugh-Verman, perception of care), and levels of dyspnea perception,
2000). Physiologic measures such as pulmonary function tests including its subscale components (sense of effort, anxiety,
and blood oxygen saturation levels, do not necessarily correlate discomfort)?
with the degree of dyspnea the individual is experiencing (Bruera et 2) What are the relationships between relevant demographic
al., 2003). Recently, the development of instruments that measure variables, overall level of quality of life, and overall level of
the perception of dyspnea across such domains have provided dyspnea perception?
researchers with a new means of assessing the individual's 3) What are the relationships between relevant demographic
perception of dyspnea (Tanaka et al., 2000). variables, the subscale components of quality of life (basic
function, activity, emotional function, cognitive function,
Since dyspnea is a subjective experience of difficult or social support, existential needs, and perception of care) and
uncomfortable breathing (Kvale, Selecky, & Prakash, 2007), it is the subscale components of dyspnea perception (sense of
intuitive to conceptualize dyspnea as a complex symptom in effort, anxiety, and discomfort)?
relationship to quality of life, including the physiological,
psychological, and social components of quality of life. This study Conceptual Model
was undertaken to explore the relationship between quality of life
and perception of dyspnea in a group of advanced lung cancer The Theory of Unpleasant Symptoms (TOUS) is a middle-range
patients in a hospice setting. theory that includes elements believed to address the symptom
experience and that allows focus on either multiple symptoms
Statement of Purpose occurring together or a single symptom (Peterson & Bredow,
2013). This theory consists of three major components: (1)
This study was proposed to help fill the gap in knowledge regarding physiological factors, (2) psychological factors, and (3)
quality of life and dyspnea perception and to examine the situational factors, understood as the antecedents of the
relationship between quality of life and perception of dyspnea in a symptom experience.
group of advanced lung cancer patients.
The TOUS implies management of the symptom will contribute to
The specific aims of this study were to: the management of other symptoms because patients with
advanced lung cancer do not experience dyspnea in isolation,
1) Describe relevant demographic variables (age, race/ethnicity, but rather in conjunction with other symptoms, concomitant
educational level, relationship status, income level), levels of stressors, and psychological existential distress. Therefore,
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dyspnea cannot be fully addressed unless Conceptual Model
these physical and nonphysical factors Figure 1. The principles of Theory of Unpleasant Symptoms (TOUS) (Lenz et al., 1995).
are understood (Kamal, Maguire,
Wheeler, Currow, & Abernethy 2011).
Success is most likely when stressors and
associative symptoms (anxiety,
depression, panic attacks) are identified
and addressed. The TOUS, therefore, is
appropriate in guiding this study, as it
provides a multidimensional framework
that includes physiological, psychological,
and situational factors that impact
performance factors.

Theoretical Definitions

1) Dyspnea. Medical Dictionary for the

Health and Professions and Nursing
(2012), defined dyspnea as
shortness of breath, a subjective
difficulty or distress in breathing,
usually associated with disease of
the heart or lungs; occurs normally
during intense physical exertion or at
high altitude. The American Thoracic
Society (1999) uses broad definition
factors and states that dyspnea is a
subjective experience of breathing
discomfort that consist of qualitative
distinct sensations that vary in
intensity. The sensation of dyspnea
is a subjective phenomenon with
physical, psychological, social, and
spiritual existential contributors. Note. Adapted From “Collaborative Development of Middle-Range Nursing Theories: Toward a Theory of
Therefore, there is no objective Unpleasant Symptoms,” by E.R. Lenz, F. Suppe, A.G. Gift, L.C. Pugh, and R.A. Milligan 1995, Advances
in Nursing Science, 17(3), p. 10. Copyright 1995 by Lippincott Williams and Wilkins.
method for measuring this
phenomenon, much like pain; it is
captured by patients' report (Thomas, influences from sociocultural aspect of humanity. It is never
2009). objective, but is rather an individual's or group's unique way
Existing theory and studies of dyspnea as a symptom in the of viewing a phenomenon that involves the processing of
lung cancer population defined key attributes of dyspnea as stimuli and incorporates memories and experiences in the
frequency, intensity, and duration. The quantification of process of understanding McDonald (2011). For the purpose
dyspnea can be an important judgment in the severity and of this research study, dyspnea perception and QOL was
prognosis in lung cancer patients, but can also lead to a explored to find the relationship that describes awareness of
limiting symptom that may be responsible for the economic the unique experiences of dyspnea symptoms as an
and social disabilities (Bass, 1990). individual component of one's perception that culminates
comprehension of physiological, psychological, and
2) Perception. In a concept analysis of this term, McDonald situational factors in advanced lung cancer patients.
(2011), states that perception is an individual landscape that
could be a driving force for an action on one's view of 3) Quality of Life (QOL). The term “quality of life” is often used
processed information relating to past experience that interchangeably with terms that have conceptually similar
creates vision of the world looking through a filter of meanings, such as life satisfaction, well-being, functional
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status, or happiness (Hass, 1999). In an analysis of this term, QOL in the care of dyspneic patients are important issues in
Hass (1999) postulated that life satisfaction, well-being, and healthcare professionals' endeavors and it should be further
happiness were subjective terms referring solely to the explored.
achievement of an individual goal, while functional status is
related to externally evaluated performance task (McDaniel & Methodology
Bach, 1994). Therefore, while each of these terms could
constitute a component of QOL, they do not fully explain or Research Design
define QOL in its entirety (Taylor, Gibson, & Franck, 2008). A non-experimental, descriptive, correlational, cross-sectional
The key concept of QOL is difficult to define, and currently no design was conducted to facilitate an understanding of the
universally accepted definition exists in the health care relationship between dyspnea perception and QOL.
literature. The World Health Organization (1997) provides a Correlational research helped investigators establish a
multi-dimensional definition that defines QOL as an knowledge base for future research into casual inferences (Polit
individual's perception of their position in life in the context of & Beck, 2012).
the culture and value systems in which they live, in relation to
their goal, expectations, standards, and concerns. For the Strengths. This study sought to test and validate theories that
purposes of this study, the WHO definition of QOL as a broad- are presently constructed about how and why phenomena
ranging definition concept is used. Congruently, an happens. Dyspnea as a symptom, clearly impact one's
underlying assumption of this study is QOL is affected in a perceived QOL. In utilizing the quantitative methodology for this
complex way by the person's physical health, psychological study, it provides strength in that they produce answers that are
state, and level of independence, social relationships, solid and based on facts (Ratnesar & Mackenzie, 2006).
personal beliefs, and their relationship to salient features of
their environment. Limitations. Descriptive correlational study was used for
sample description and relationship relevancy for this study.
Summary of Literature Review Unlike many experimental studies, correlational research is
seldom criticized for its artificiality (Polit & Beck, 2012). Notably,
The literature reviewed demonstrated a possible association limitations of correlational research include difficulty of
between dyspnea perception and QOL, while elucidating a interpreting correlational findings that stem from the fact that in
patient's improved functional capacity enhances a sense of the real world, behaviors, attitudes, and characteristics, are
control and normalities of one's wellbeing. interrelated in a complex way. Therefore, interpretations of most
correlational results should be considered tentative, particularly
A significant gap in the literature reviewed is currently on if the research has no theoretical basis and if design is cross-
interventional strategies tested to improve QOL in the advanced sectional (Polit & Beck, 2012).
lung cancer population. In the descriptive studies summarized
above, relevant variables were often not addressed, and poor Setting
performance patients were overrepresented among the non- Participants were recruited through a hospice care agency
participants. Consequently, very little documentation exists to distributing information sheets to the clients upon admission to
provide a basis for the development of effective interventional the hospice care setting with a diagnosis of advanced lung
strategies. Thus, as a first step, the relationship between dyspnea cancer who reported dyspnea. A phone number was given for
perception and QOL must be examined more closely. eligible participants to call to receive information in which the
study will be described. Potential participants were given a
Overall, the literature review clearly indicates much is needed to consent form at the hospice setting for them to read, review, and
further our understanding of dyspnea in relationship to quality of discuss in which questions were answered at that time. All
life. At present, the most commonly used intervention for dyspnea participants meeting the eligibility criteria were given an IRB
is supplemental oxygen and medication (Henoch et al., 2007). approved brochure describing the study.
Nursing research and randomized controlled studies conducted in
the United Kingdom support the use of nursing interventions such Power Analysis
as behavioral modification and psychosocial support. Future
directions for my research in this topic will be focused on Power analysis is built on the concept of an effect size, which
developing a uniform evidence-based clinical practice guideline expresses the strength of relationships among research
for the management of dyspnea in advanced lung cancer. In variables. If there is a reason to expect the independent and
addition, studies that incorporate symptom management and dependent variables will be strongly related, then a relatively
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small sample may be adequate to reveal the relationship by Tanaka and colleagues (2000). The scale measures three
statistically (Polit & Beck, 2012). The sample size of this study factors: 1) sense of effort; 2) sense of anxiety; and 3) sense of
was decided by using an effect size, desired power, and an discomfort. Quality of life is measured by the Assessment of
acceptable significance level. According to Polit and Beck Quality of Life at the End of Life (AQEL) scale, developed by
(2012), power analysis is used to decrease the chances of Type Henoch et al (2010). This scale includes seven subscales: basic
II errors, thus adding to the validity of the statistical analysis by function; activity; emotional function; cognitive function; social
estimating how big the sample size should be. The effect size is support; existential needs; and perception of care.
the estimated population effect size and this determines the
magnitude of the relationships between the independent and Instruments
dependent variables. Therefore, based on a power analysis
table, which provides the estimated population correlation The CDS and AQEL consisted of a total of 33 questions
coefficient, alpha, and power, the required sample size for a answered by the participants with the help of a relative or
moderate size correlation coefficient (ρ = .40), an alpha of 0.05, healthcare provider. The questions were answered at the
and a power of .80 are approximately 47 (Polit & Beck, 2012). participant's home, a nursing facility or hospital. To minimize the
burden on the participants, questionnaires were given to the
Sample participants during the initial meeting with the primary
investigator, and then picked up the following week.
Purposive sampling was used to gather knowledge about the
population to select sample members. Researchers decided
Cancer Dyspnea Scale
purposely to select people who are judged to be typical of the
population or particularly knowledgeable about the issue under The CDS consists of 12 items, with a 5-point scale ranging from 1
study. Inclusion criteria are patients having advanced lung (not at all) to 5 (very much), which may be grouped into three
cancer at stage IIIA or above and able to read, write and factors according to the original validation analysis (Tanaka et al.
understand English. An exclusion criterion is severe mental or 2000). The factors include a physical factor called sense of effort
cognitive impairment. Attrition is most likely to occur in this (5 items), a psychological factor called sense of anxiety (4
population due to death or disability, which will be addressed items), and a factor reflecting the uncomfortable feeling at rest
during the 3 to 6 months of data collection period by a 20% called sense of discomfort (3 items). The reliability and validity of
increase participants drawn from the newly admitted lung the CDS are presented in Table 1 below.
cancer patients at Elizabeth Hospice Center (Polit & Beck). In
the case of advanced lung cancer patients, estimating sample Assessment of Quality of Life at the End of Life
size needs should be a factor in anticipated loss of participants
over time. Therefore, the researcher should expect a certain The AQEL is a QOL assessment scale developed for palliative
amount of participant loss and recruit accordingly (Polit & Beck, care and consists of 20 questions across four basic domains
2012). (physical, psychological, social, and existential). The physical
domain is assessed with the items: need to rest at daytime,
The initial available population for the study sample was only activities of daily living, strength, pain, nausea, bowel problems,
61. The proposed original study was to include 47 participants, and dyspnea (7 items). The psychological domain is measured
however due to the severity of the illness such as cognitive by memory, worry, insomnia, concentration, and depression (5
decline, death and disability, and patient's refusal to participate, items). The social domain is measured by sharing problems with
it lowered the number of eligible participants during the 8-month family and being regarded as usual by family and friends (2
period of data collection to 22 participants. The sample of 22 items). The existential domain is measured by ability to do what
advanced lung cancer patients at stage IIIA or above who one wants, meaningfulness, and happiness (3 items). In a
reported dyspnea and were able to read, write, and understand subsequent, revised version (2000), the authors developed
English. Data collection was done at the Elizabeth Hospice these domains into seven subscales: basic function; activity;
Center from January 2014 to August 2014. In addition, there emotional function; cognitive function; social support; existential
was low census of advanced lung cancer patients during the needs; and perception of care. Initial assessment demonstrated
data collection period, which played an important role in regards a strong correlation with the well-validated QLQ-C30 (Axelsson
to enrollment and attrition status in my study. & Sjoden, 1999).

Operational Definitions Data Collection Procedures

For the purposes of this study, perception of dyspnea qualities The data collection and management processes were handled
was measured by the Cancer Dyspnea Scale (CDS) developed by the primary investigator (PI). All data were retained and
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Table 1. Measurement Instruments

Variable Instrument Description Reliability Validity

Dyspnea Cancer Dyspnea 12 items, with a 5-point scale Cronbach's alpha coefficients Factors significantly correlate
Perception Scale (CDS) ranging from 1 (not at all) to were 0.83,0.81 and 0.94 with VAS r=0.57,p<0.001
5 (very much) (Tanaka et al., 2000) (Tanaka et al., 2000)

Quality Assessment of Quality QOL assessment scale The alpha coefficient of internal AQEL correlated strongly
of Life of Life at the End of Life consisting of 20 questions consistency varied between 0.55 (r>.70) with QLQ-C30
(AQEL) about QOL and one and 0.76 (Axelsson & Sjoden, 1999) (Axelsson & Sjoden, 1999)
complementary question

Demographic Basic Demographic Age, race/ethnicity, N/A N/A

Form Information education level, relationship
status, income level

treated securely by the PI. Informed consent, as required by the relationships between relevant demographic variables, the
USD IRB committee and participating facilities, were obtained subscale components of quality of life (basic function, activity,
from all participants. All participants understood this study is emotional function, cognitive function, social support,
strictly voluntary and confidential. Participant data were given existential needs, perception of care) and the subscale
numerical assignments during the collection of data. The study components of dyspnea perception (sense of effort, anxiety,
began immediately following institutional review board (IRB) discomfort).
approval from the University of San Diego (USD) and the hospice
Specific Aim #3: Examine the relationships between relevant
care setting facilities. Data were collected for analysis and
demographic variables, the subscale components of quality of
stored in a secured and locked file cabinet in the office of the PI.
life and the subscale components of dyspnea perception.
Human Subjects Pearson's correlation coefficient described the significant
relationship between the study variables. Pearson correlations
IRB approval was obtained from both the University of San Diego
coefficient (r) was used to determine association among
and participating facilities. Participants received a copy of the
continuous variables; Spearman Rank correlation (rs) analysis
informed consent and Bill of Rights, which were reviewed and
was used to establish a relationship between ordinal and
discussed with the participant prior to agreeing to participate.
continuous variables (Mertler & Vannatta, 2012; Munro, 2008;
During the recruitment process, participants had the opportunity
Polit, 2010). The value range for r is -1 to 1 with 0 having no
to ask about the purpose, type of study, concerns, as well as
relationship between the variables. A positive r coefficient
voluntary enrollment. Once questions were addressed to the
signifies direct relationship where a negative r reveals an
participant's satisfaction and IRB approved, consent forms were
inverse relationship. The established p value is pre-
provided for voluntary participation and a signed copy was given
determined at 05. SPSS 20.0 software was utilized to perform
to the participant.
the analyses described above.
Data Management and Analysis
Results
In order to achieve the specific aims of the study, the following
A detailed analysis of research findings examined the
data analysis strategies were used for each specific aim as
relationship of quality of life and perception of dyspnea in a
described below.
group of advanced lung cancer patients. A summary of the
Specific Aim #1: Describe relevant demographic variables. participant demographic and descriptive data is presented in
Descriptive statistics were used for sample description and detail. The result of the study findings is organized around the
analysis. Frequency distributions are displayed utilizing tables. three Research aims:
The central tendency of the mean, mode, median, and standard
deviation were obtained and ranges examined. Research Aim 1 Descriptive Findings

Specific Aim #2: Examine the relationship between relevant Specific Aim #1: Describe relevant demographic variables
demographic variables, overall level of quality of life, and overall (age, race/ethnicity, educational level, relationship status,
level of dyspnea perception, based on Spearman's Rank and income level), levels of quality of life, including its subscale
Pearson's correlational analyses. This examined the components (basic function, activity, emotional function,
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cognitive function, social support, existential needs, perception included Caucasian (81.8%), African American (4.5%), Hispanic
of care), and levels of dyspnea perception, including its Latino (9.1%), and Asian (4.5%). The average age in years was
subscale components (sense of effort, anxiety, discomfort). 77 ±11.40 years old with a range of 50 to 90. The average
annual income was $40,000.00 ±$52,328.29 with a range of $0
Characteristics of the sample included 54.5% female and to $250,000.00 (Table 2).
th
45.5% male. The educational level ranges from 8 grade to
PhD degree with the majority of 36.4% with a high school Assessment of the Quality of Life at the End of Life (AQEL)
degree. Relational status included single (13.6%), married
(40.9%), divorced (9.1%), and widowed (36.4%). Ethnicity/race The AQEL scores were calculated for 22 participants. Table 3
presents the descriptive statistical results based on 20 questions
Table 2. Frequency Distributions for Demographic Information (N = 22) about quality of life at the end of life. Quality of life at the end of
life was scored on a 1 – 10 scale. Overall, the AQEL score mean
revealed an approximate average level of quality of life at the end
Variables Count Percentage of life (M = 5.55, SD = .45). For Frequency Distribution for
Assessment of Quality of Life at End of Life, see appendix A.
Gender
Male 10 45.5%
Female 12 54.5%
Cancer Dyspnea Scale (CDS)
The CDS was used to measure dyspnea perception, which
Educational level
8th grade 2 9.15%
includes its subscale components of discomfort, anxiety, and
High School 8 36.4% sense of effort. Table 4 presents the descriptive statistical results
Some College 7 31.8% based on the dyspnea scale which has a total of 12 items with a 5-
BA 3 13.6%
Table 3. Descriptive Statistics for Assessment of
MA 1 4.5%
Quality of Life at End of Life (N = 22)
Grad (PhD) 1 4.5%

Relational Status Mean ± SD SE

Single 3 13.6%
Married 9 40.9%
Divorced 2 9.1% Subscales
Widowed 8 36.4% Basic Functions 5.63 ± 9.05 1.93
Activity 4.45 ± 2.28 0.49
Ethnicity/Race 4.64 ± 1.27 0.27
18 81.8%
Emotional Function
Caucasian
African American 1 4.5% Cognitive Function 5.82 ± 2.43 0.52
Hispanic Latino 2 9.1% Social Support 5.45 ± 1.94 0.41
Asian 1 4.5% Existential Needs 5.27 ± 1.32 0.28
Age in Years Perception of Care 9.66 ± 0.52 0.11
50-69 5 23%
70-79 5 23% Total Score 5.55 ± 0.45 0.10
80-89 8 37%
90.00 4 18%
Physical Symptoms
Annual Income Q 4: Pain 4.48 ± 3.03 0.65
.00 2 9.1% Q 5: Nausea 2.05 ± 2.40 0.51
15000.00 2 9.15%
20000.00 2 9.1% Q 6: Bowel trouble 4.20 ± 3.03 0.65
25000.00 5 22.7% Q 7: Dyspnea 4.32 ± 2.80 0.60
28000.00 1 4.5%
30000.00 3 13.6% SD= Standard Deviation, SE=Standard error
35000.00 2 9.1%
43000.00 1 4.5% point scale ranging from 1 (not at all) to 5 (very much). The overall
45600.00 1 4.5%
50000.00 1 4.5%
total mean score of CDS revealed relatively mild perception of
120000.00 1 4.5% dyspnea (M = 14.27, SD = 7.64). Standard error indicates 1.63
250000.00 1 4.5% average error for a sample size of 22. For Frequency Distribution
for Cancer Dyspnea Scale, see appendix B.
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Research Aim #2: Examine the relationship between relevant 0.511, p = .015). There was a significant inverse relationship
demographic variables, overall level of quality of life, and overall between AQEL total scores and pain. The higher the level of
level of dyspnea perception. pain the participant experienced, the lower their overall quality
of life, (rs (1, 20) = -0.449, p = .036). There was a significant
There is no relationship between demographic variables, overall
level of quality of life, and overall level of dyspnea perception. relationship between pain and cognitive function. The higher
However, data analysis revealed the following trends: AQEL total the participants cognitive awareness are, the greater their level
score indicated females appears to have a slightly higher level of of pain, (rs (1, 20) = 0.483, p = .023). There was a significant
relationship between nausea and cognitive function. The
Table 4. Descriptive Statistics for Cancer Dyspnea higher the level of nausea is, the higher the participants' level of
Scale and Subscales (N = 22) cognitive function, (rs (1, 20) = 0.459, p = .032). There was a
significant relationship between nausea and pain. The higher
Mean ± SD SE the level of nausea is, the higher the participants' level of pain,
(rs (1, 20) = 0.500, p = .018).
Subscales
Discomfort 5.84 ± 3.86 0.82 Quality of Life Total Score
Anxiety 3.84 ± 3.11 0.66
Basic function was significantly related with the AQEL total
Effort 4.45 ± 2.32 0.50 score. The more independent the participants were with
activity of daily living (ADLs,) the higher their overall quality of
Total Score 14.27±7.64 1.63 life, (rs (1, 20) = 0..480, p = 0.024). Activity was significantly
related with the AQEL total score. The higher degree of
SD= Standard Deviation, SE=Standard error physical strength the participant had the higher their overall
quality of life, (rs (1, 20) = 0.49, p = 0.020). There was a
QOL than males (r=.224, p = .32). In addition, CDS total score significant inverse relationship between cognitive function and
data analysis indicated the following possible trends. As the overall quality of life. As the participants' cognitive awareness
patient becomes older they tend to have higher level of dyspnea declines, the QOL appears to increase, (rs (1, 20) = -0.524, p =
(r=.326, p = .14) and married individuals experience less dyspnea .012). There was a strong inverse significant relationship
than single, divorced, widowed individuals (r=-.292, p = .19). between perception of care and the AQEL total score (rs (1, 20)
= -.603, p = .003). As participants' perception of care increases
Research Aim #3: Examine the relationships between relevant their overall QOL decreases. There was an inverse
demographic variables, the subscale components of quality of life relationship between bowel movement and AQEL total score.
(basic function, activity, emotional function, cognitive function, As the difficulty of bowel movements increased, the
social support, existential needs, perception of care) and the participants overall quality of life decreased, (rs (1, 20) = -0.572,
subscale components of dyspnea perception (sense of effort,
p = 0.005).
anxiety, discomfort).
Cancer Dyspnea Scale
Demographics
There was a strong significant relationship between CDS
Education and income had a strong significant relationship. The
anxiety and CDS discomfort. The higher the level of anxiety is,
more educated the participants were, the higher their level of
the higher the participants' level of discomfort, (rs (1, 20) =
income (rs (1, 20) = 0.58, p = 0.005).
0.823, p = .000).
Quality of Life Subscales
Cancer Dyspnea Scale Total Score
There was a positive correlation between educational level and
There was a strong significant relationship between the CDS
AQEL existential needs (rs (1, 20) = 0.450, p = .036). The higher
total score and the CDS discomfort score, the higher the level of
the level of education the participants attained, they report higher discomfort participants felt, the higher the CDS total score, (rs
satisfaction in life's meaning.
(1, 20) = 0.936, p = .000). There was a strong significant
relationship between CDS anxiety and CDS total score, the
Physical Symptoms
higher the level of anxiety the participants felt, the higher the
There was a significant inverse relationship between pain and CDS total score, (rs (1, 20) = 0.882, p = .000). There was a
age. As the participants aged, they report less pain, (rs (1, 20) = - significant relationship between the CDS sense of effort and
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Table 5. Spearman's Rank Correlations Between Measures

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15

(1) Age
(2) Education -.034
(3) Income .097 .580**
(4) AQEL Total .095 -.132 -.312
(5) AQ Basic Function .157 .221 .161 .480*
(6) AQ Activity -.060 -.250 -.418 .490* .035
(7) AQ Cog. Function -.350 .016 .381 -.524* -.407 -.380
(8) AQ Exis. Needs -.017 .450* .192 .041 -.017 -.206 -.115
(9) AQ Percept Care .066 -.142 -.258 -.603** .059 .421 -.328 .030
(10) AQ 4 Pain -.511* -.076 .126 -.449* -.297 -.137 .483* -.064 -.291
(11) AQ 5 Nausea -.269 .158 .278 -.392 -.243 -.372 .459* .021 -.141 -.500*
(12) AQ 6 Bowel .215 .320 .331 -.572** -.002 -.235 -.135 .349 -.253 .051 .021
(13) CDS Discomf .178 .237 .372 -.249 -.098 -.237 .095 .002 .102 .126 .271 .115
(14) CDS Anxiety .145 .172 -.237 -.274 -140 .016 -.011 .090 .169 .285 .130 .331 .823**
(15) CDS Effort .052 .101 -.210 -.088 -.110 .054 .045 .253 -.233 .417 .187 .087 .298 .147
(16) CDS
Total Score .210 .295 -.370 -.263 -.234 .093 .068 .154 .004 .353 .222 .337 .936** .882** .456*

CDS total score. The higher the participants level of breathing Demographics
effort, the higher their overall CDS total score, (rs (1, 20) = 0. 456,
p = 0.033). (See Table 5 below for Correlation Matrix). This study was conducted in a socio-economic status setting of
an affluent neighborhood. As expected, socioeconomic status
Discussion played an influential role in the ways of coping and adapting.
Income, education, and health insurance coverage influenced
As indicated by the literature review conducted in this study, access to appropriate early detection, treatment, and palliative
dyspnea is the most prevalent symptom in patients with care (Ward, et al., 2004).
advanced lung cancer (Zhou et al., 2009). Even though the level
of dyspnea is generally assessed through objective parameters The American Cancer Society's (2014) recent report indicated
that rely on respiratory function tests such as arterial blood that lung cancer mainly occurs in older people. About 2 out of 3
gasses values, subjectively perceived dyspnea is not always people diagnosed with lung cancer are 65 or older; fewer than 2%
consistent with objective dyspnea indicators (Karapolat, et al., of all cases found in people younger than 45, the average age at
2008). Therefore, this study recommends effects of dyspnea in time of diagnosis is about 70 years old (ACS, 2014). In
QOL should be thoroughly assessed in concurrent to objective comparison to my study participants, it is about the same as the
indicators of dyspnea in relationship to the subjective general assumption with the exception of 4 participants in their
perception. It is important to note that most of the participants in 90's. This may be attributed to their higher social economic
this study had their own perception of dyspnea, as described by status, which affords a higher level of health care.
their own physical features, involvement, and immediate
reactions to their environment, physical characteristics, and Patient Sample
psychosocial state of mind.
The vulnerability of the patients' sample used for this study led to
The primary purpose of this study was to examine the challenges, most especially regarding participants recruitment
relationship between quality of life and perception of dyspnea in and retention. Terminally ill patients constituted a vulnerable
a group of advanced lung cancer patients. This study group and had more difficulties due to presence of multi-
hypothesized that quality of life is related to perception of symptoms and severe psychophysiological problem (Addington-
dyspnea as indicated by hospice patients' own bodily reaction Hall, 2007). Ferrell (2004) writes, “There is no option to avoid
that describes the triggering factors influencing dyspnea research within the field of palliative care, as like all disease
perception and QOL. areas, there is critical need to conduct research to advance the
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field. Improved care will not happen without inquiry” (p. 408). nausea relates to an increase of cognitive function and self
Therefore, even if challenges and concern arise in this chosen report of pain level.
population, both exquisite practicality and ethical dilemma of
palliative research must be conducted (Ferrell, 2004). Findings from the AQEL results are supported by past research
conducted by Henoch, Axelsson, and Bergman (2010). Their
Assessment of Quality of Life at the End of Life (AQEL) study gathered some evidence for the validity of AQEL when
used with palliative care patients. Relationships were found
The overall AQEL score mean revealed an approximate average among physical symptoms, existential need, basic function,
level of QOL at the end of life (M=5.55, SD= .45). The overall and activity scales. However, based on this study, additional
AQEL total score indicated that more than 50% of the participant work is further needed and recommended to understand the
reports a satisfactory quality of life at the end of life. The subscale structure of the measure as well as its responsiveness to
component of AQEL such as basic function and activity had a palliative information and clinical changes in population of
significant relationship with the overall AQEL total score, patients with advanced lung cancer close to the end of life
indicating an increased level of satisfaction with their physical (Henoch, Axelsson, & Bergman 2010).
well being. A negative relationship was also found between
cognitive function and total AQEL score. This indicated that as Assessment of Cancer Dyspnea Scale (CDS)
the participants' cognitive function declined, their overall QOL
appeared to increase. However, this would be expected because The total mean score of CDS (M = 14.27, SD = 7.64) indicated a
the total AQEL score is derived from the items in the instrument's relatively mild perception of dyspnea among the study
subscale item. Past literature found that when cognitive function participants. However, a strong positive relationship between
declines due to the disease progression, it inhibits patients' self CDS anxiety and CDS discomfort was noted, in addition to a
report of their overall QOL. Therefore, it appears as if the patient's strong positive relationship between CDS total score, CDS
perception of OQL improved. Positive relationship is also noted anxiety, CDS discomfort, and CDS sense of effort. This result
between existential need and educational level. The majority of suggested that participants with increased level of physical and
the participants perceive life's meaning in relationship to emotional discomfort reported higher level of anxiety, which
happiness on the basis of educational attainment and or life's indicated difficulty of breathing pattern. Findings from this study
accomplishment. There was a strong inverse significant is supportive of Tanaka et al. (2002), which discussed that
relationship between perception of care and the AQEL total dyspnea as perceived symptom is related to psychological
score. As participants' perception of care increases, their overall distress and is reported to decrease QOL in patients with
QOL decreases. This indicates that with dependence of advanced lung cancer (Tanaka et al., 2002). Further emphasis
perceived care, participants' QOL declines due to disease in psychosocial interventions, such as relaxation techniques
progression. and visibility of social support from family care giver and
hospice nurses, should be explored so that it can lead to
The AQEL overall total score was also calculated for significance improved reporting of perceived dyspnea among patients with
and relationship with physical symptoms such as pain, nausea, advanced lung cancer in the hospice setting.
bowel movement, and difficulty breathing. Negative relationship
was found between pain and age indicating that as participants Finally, in examining the relationship between relevant
age, they report less pain. This could be due to the trajectory of demographics variables, overall level of quality of life, and
the advanced lung cancer disease and metastasis to the brain, overall level of dyspnea perception, there were no significant
which declines cognitive function that inhibits participant's ability relationships found. However, data analysis revealed the
to report pain. Significant relationship was found between pain following possible trends between AQEL total score and female
and cognitive function, indicating that the higher the participants' participants indicating females reported better QOL than
cognitive awareness, the greater their level of pain report. males. This is contrary to study conducted by Weiner et al
Negative relationship was also noted between AQEL total score (2002), where their findings suggest that women with asthma
with pain indicating the higher the participant's level of pain, the report more symptoms, use more rescue medications,
lower their overall QOL. Negative relationship was found experience poorer QOL, and are admitted to the hospital more
between bowel difficulties and AQEL total score indicating as frequently than men. Their study suggested that because
participants report higher difficulty with bowel movements, their women seek more medical attention and experience poorer
overall QOL decreases. Finally, a significant relationship was QOL, women then actually experience greater discomfort to
found between nausea and cognitive function and nausea and airflow obstruction than men. The possible reason female
pain. These indicate that participant's higher-level report of participants in this study might have reported better QOL than
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men could be due to the ratio of women more than men, social hospice settings would benefit from implementing evidence
and economical disparity, and participants educational level. based research interventions that further suits the relationship of
Findings might be different if study is conducted in diverse dyspnea perception with psychophysical aspects concurrently to
population. In regards to age and CDS total score, it revealed improve QOL.
that older participants reported higher level of dyspnea. The
possible explanation for this finding could be that aging process The limitations of this study included its small sample size and the
in cancer patients affects precipitation of disease progression actual attrition due to disease progression and death.
that leads to difficulty of breathing pattern. Thompson, Sola, and Cubrana (2005) indicated that although
treatment advances have led to a steady increase in survival
The aims of this study were formulated to address the research prognosis for the majority of patients, the average survival
questions of whether relationships existed between subscales remains at about eight months from diagnosis. Therefore, the
and total score for both the Assessment of Quality of Life at the need for high quality care to support patients and reduce the
End of Life and the Cancer Dyspnea Scale in relationship to QOL devastating symptom of dyspnea is essential. This study also
and perception of dyspnea in a group of advanced lung cancer met with some difficulties in terms of enrollment retention due to
patients in a hospice setting. The results confirmed the literature disease progression and disease comorbidity. Severe cognitive
review suggestions that there was indeed some relationship decline was noted on potential participants due to brain
between the subscales, AQEL, and CDS measurement total metastasis or increase dose of narcotic medication. Severe
scores. In the 22 sample participants of advanced lung cancer weakness and pain were also noted in patients with pre-existing
patients in the hospice care setting, results revealed that the diabetes, renal failure and cardiovascular disease. The
AQEL subscales (basic function, activity, and cognitive function) population of this study was also notably conducted in a setting
had a significant correlation to the AQEL total score. In addition, consistent with an affluent community.
the physical domain (pain and bowel movement) indicated a
strong inverse relationship to the AQEL total score. As indicated Implication for Nursing Practice
by prior research, analysis revealed that the CDS subscales
(discomfort, anxiety, and sense of effort) had a strong significant Quality of Life and perception of dyspnea in advanced lung
relationship to the CDS total score. Furthermore, it is important cancer in a hospice setting involves extensive exploration and
to note that the result geared toward the second aim of this adaptation when it comes to coping strategies with individuals'
research study, indicated no significant relationships between perceived difficulty of breathing leading to feeling of anxiety,
the participants' demographics, AQEL total score, and CDS total hopelessness, and fear of impending death (Twycross, Wilcock,
score. However, examination of data trends revealed possible & Stark-Toller, 2009). The adapted conceptual theory of
relationships between some of the variables. For instance, as unpleasant symptoms (Lentz et al., 1995) guiding the study
age increased, participants in general perceived lower quality supports nursing practice in understanding the concept of QOL in
life and lower breathing discomfort scores. Hence,the small relationship to perceived dyspnea symptom that affects the
sample size may have hindered the relevancy outcome of the essential component in treating breathlessness in an effort to
study. improve patients' QOL. Focusing on dyspnea perception,
functioning capacity, and psychosocial factors will enable nurses
The strength of this descriptive study is it constituted an initial in a hospice setting to determine the efficacy of a preventative
step in examining the relationship between dyspnea perception approach to reduce the burden of dyspnea. The need for
and QOL in patients with advanced lung cancer. In addition, the continuing education that focuses on the multidisciplinary
AQEL and CDS questionnaires were well established training may yield to improving treatment of dyspnea and the
instruments as evidenced by strong reliability and validity quality of life in patients with advanced lung cancer.
scores. The investigation of this relationship, in a
multidimensional way, served as a basis for future studies to Another factor this study identified is the effect of dyspnea on
develop and test interventions to decrease dyspnea and quality of life in general. Understanding this symptom from the
enhance QOL in this population (Gallo-Silver & Pollack, 2000). participants' perspective evoked powerful images in the
The need to explore numerous interventions in lung cancer and language they used to describe dyspnea (O'Drisscoll, Corner, &
dyspnea is imperative. It is vital the healthcare team work Bailey, 1999). Many reported feelings of anxiety, fear, and panic
therapeutically with patients and family to help them live better during attacks of dyspnea and some correlated this sensation to
with illness and its manifestations. In doing so, this forms a large impending death. Therefore, plan of care with a refined
part of the researcher's role in educating nurses about dyspnea assessment tool must be considered, most especially the
management in lung cancer patients. All practitioners in functional and psychosocial aspect of dyspnea for the betterment
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of enhanced symptom management and overall care of American Cancer Society. (2013). Lung Cancer (non-small cell)
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Pain and Symptom Management, 23(6), 484-489. About the Author
Tanaka K., Akechi T., Okuyama T., Nishiwaki Y. & Uchitomi Y. (2000).
Development and validation of the Cancer Dyspnoea Scale: a
multidimensional, brief, self-rating scale. British Journal of Cancer
Barbara A. Roces PhD, MSN, NP, RN received her Bachelor
82(4), 800-05.
Tanvetyanon, T., Soares, H.P., Djulbegovic, B., Jacobsen, P.B., & Bepler, G. of Science in Nursing from University of Southern California at
(2007). A systematic review of quality of life associated with standard Los Angeles and her Master of Science in Nursing from
chemotherapy regimens for advanced non-small-cell lung cancer. University of California Los Angeles with specialization as an
Journal of Thoracic Oncology, 2, 1091-1097. doi: Oncology Nurse Practitioner. She obtained her PhD in Nursing
10.1097/JTO.0b013e31815cff64 from the University of San Diego in California. She is an
Taylor, R. M., Gibson, F., & Franck L.S. (2008). A concept analysis of health- Associate Professor of Nursing at West Coast University in Los
related quality of life in young people with chronic illness. Journal of Angeles, California. Additionally, she works as a Hospice/
Clinical Nursing, 17, 1823-1833. Palliative Nurse Practitioner. Her dedication to research is
Teunissen, SCCM, de Graeff, A., and Voest, E.E. (2007). Are anxiety and exceptional as evident by multiple presentations of her
depressed mood related to physical symptom burden? A study in research study "Patients with Advanced Lung Cancer: Quality
hospitalized advanced cancer patients. Palliative Medicine 21, 341-346. of Life and Perception of Dyspnea.” Her research interest
Thomas, J. R. (2009). Management of dyspnea. In: Ettinger DS, ed Cancer includes promotion of Quality of Life in Palliative/Hospice
and Drug Discovery Development: Supportive Care Cancer Therapy. patients, as well looking at the psychophysiological aspect of
Totowa, NJ: Humana Press. dying patients with advanced cancer diagnosis.
Thompson, E., Sola, I., & Cubrana, M. (2005). Non-invasive interventions
for improving well-being and quality of life in patients with lung cancer:
A systemic review of evidence. Lung Cancer, 50(2), 163-176.