by Margaret I. Fitch, RN, PhD and Rose Steele, RN,... social and psychological aspects of quality of life have been... for which younger women are at most risk (Sarna, Brown,...

doi:10.5737/1181912x18118
Supportive care needs
of women with lung cancer
by Margaret I. Fitch, RN, PhD and Rose Steele, RN, PhD
social and psychological aspects of quality of life have been reported
for which younger women are at most risk (Sarna, Brown, Cooley,
Williams, Chernecky, Padilla et al., 2005). The disruptions in quality
of life are often linked to severity of symptoms and physical
impairment (Hopwood & Stephens, 2000).
Nurses have a key role to play in assessing patient responses to
illness and assisting individuals to manage the challenges of severe
symptom distress or advancing physical impairment. As yet, the body
of knowledge that would inform nursing practice about caring for
women with lung cancer remains scant. While some information is
known about the supportive care needs of patients with cancer, there
is a paucity of knowledge about what type of help women with lung
cancer might need during this experience with cancer.
The main purpose of this exploratory study was to identify the
supportive care needs of women with lung cancer who attend an
ambulatory regional cancer centre. Lung cancer has more than a
physical impact on those who are diagnosed with the disease, yet
relatively little has been reported on the supportive care needs beyond
those for symptom management.
Abstract
A total of 34 women diagnosed with lung cancer participated in this
exploratory study by completing a self-report questionnaire
(Supportive Care Needs Survey). The data provided clear indication
that a range of needs exists for this group of women and many needs
remain unmet. Lack of energy, pain, and concern about those close to
them were the most frequently reported needs. Patients expressed
difficulty managing their needs and many experienced emotional
distress because of their difficulties. Suggestions for practice and
future research are offered to assist cancer nurses in caring for this
group of patients.
Because of its relative frequency and poor survival rates (NCIC,
2006), lung cancer is the leading cause of premature death due to
cancer. Consequently, most patients with lung cancer experience a
rapid and fatal course of illness. As symptoms appear and increase in
severity, patients with lung cancer often experience difficulties in
managing day-to-day activities. Symptoms such as breathlessness
(e.g., Edmonds, Karlsen, Khan, & Addington-Hall, 2001;
Krishnasamy, Wilkie, & Haviland, 2001; Sarna et al., 2004), coughing
(e.g., Bailey, Parmar, & Stephens, 1998; Given, Given, & Stommel,
1994; Hopwood & Stephens, 1995; Sarna, et al., 2004), anorexia (e.g.,
Sarna, Lindsey, Dean, Brecht, & McCorkle, 1994), and weight loss
(e.g., Brown & Radke, 1998) have all been reported in the literature.
In a recent study designed to better understand the symptoms
experience of individuals with lung cancer, fatigue and pain were the
most frequently identified symptoms (Kiteley & Fitch, 2006). In
addition, participants indicated they were dealing often with several
symptoms at one time. Unfortunately, much of the reported literature
does not describe data in terms of gender-specific observations.
Recently, links have been made between the severity of physical
symptoms and functional impairment and the quality of life for lung
cancer patients. Hopwood and Stephens (2000) reported depression as
common and persistent in lung cancer patients and functional
impairment as the most important risk factor for its presence.
Depression increased by 41% for each increment in functional
impairment. Trippoli, Varani, Lucioni, and Messori (2001) reported
metastatic disease, with its increase in bodily pain and decrease in
physical functioning as having the greatest impact on quality of life.
Fluctuations in quality of life have also been reported for lung cancer
patients on treatment (John, 2001; Hollen, Gralla, & Rittenberg, 2004).
Hence, the diagnosis of cancer and its treatment has more than a
physical impact upon an individual. Social, emotional, psychological,
spiritual, and practical consequences also frequently emerge for
individuals who are living with cancer (Ashbury, Findley, Reynolds, &
McKerracher, 1998; Charles, Sellick, Montesanto, & Mohide, 1996;
Whelan et al., 1997). In particular, as disease and symptoms progress
and become more pronounced, patients may experience a variety of
difficulties and challenges in coping with the situation (Bradley, Davis,
& Chow, 2005; Sarna et al., 2004; Bruera et. al., 2001).
Psychosocial distress is a common experience for cancer patients,
especially during the time directly following diagnosis and as one’s
condition deteriorates. Zabora, Brintzenhofeszoc, Curbow, Hooker,
and Piantadosi (2001) noted that approximately 20% of cancer
patients experience a significantly elevated level of distress after a
Literature review
Women’s health or ill health is an issue that has been receiving
more attention in the literature in the past few years. There is a
growing body of evidence that supports the idea that there are
differences to disease processes that may be due to sex (biological
differences) or gender (socio-cultural differences). There may also be
differences regarding coping and quality of life that need to be
understood.
Lung cancer is one disease where differences between men and
women have been identified. For example, difference in susceptibility
to the disease (Siegfried, 2001), type of cancer (Groff, 2002), stage of
disease (Erridge, 2003) and survival (Radzikowska, Glaz, &
Roszkowski, 2002) have been isolated. At present, lung cancer is the
leading cause of death in Canadian women. It is responsible for as
many deaths as is breast cancer and all gynaecological cancers
combined (National Cancer Institute of Canada [NCIC], 2006). In
2006, 10,600 women were diagnosed with the disease and 8,600 are
expected to die from it. Pre-menopausal women more often present
with advanced disease and undergo more extensive surgical resection
when compared to older women (post-menopausal), yet show a
survival advantage after covariate adjustment (Moore, Mery,
Jaklitsch, Estocain, Bueno, Swanson et al., 2003). Additionally, postmenopausal women show a survival benefit over their male
counterparts (Moore et al., 2003).
Despite recent advances in treatment, lung cancer still remains a
largely incurable disease. The five-year relative survival for women is
18% (NCIC, 2006). The diagnosis of lung cancer and its subsequent
treatment has a physical impact upon individuals, as well as social,
psychological, and emotional consequences. Serious disruptions in
Margaret I. Fitch, Head, Oncology Nursing and Supportive
Care, Toronto-Sunnybrook Regional Cancer Centre, Toronto, ON
E-mail: [email protected]
Rose Steele, RN, PhD, Associate Professor, School of Nursing,
Faculty of Health, York University, Toronto, ON
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diagnosis. Krishnasamy et al. (2001) reported that about two-thirds of
the patients with lung cancer in their study described feelings of
anxiety, yet professional caregivers estimated that anxiety would be a
problem in less than a quarter of these patients. Morasso et al. (1999)
reported that low functioning state was significantly associated with a
high proportion of patients experiencing unmet needs in personal
care, information, communication, occupational functioning, and
emotional closeness. Additionally, patients with unmet needs showed
significantly higher psychological and symptom distress. In a mixed
method study, Maliski, Sarna, Evangelista, and Padilla (2003) found
that 31% of lung cancer survivors were depressed and were inclined
towards a more negative outlook on life than the non-depressed
group. Bradley and colleagues (2005) reported that 61% of patients
attending their clinic (n=1,070) suffered from depression. The
depression was moderate to severe in 30%. These authors suggested
that quality of life could be improved if health professionals provided
appropriate interventions.
Fallen and Schmit (2004) reported depressed coping was
associated with shorter survival time in lung cancer, while Sarna et al.
(2005) noted that 35% of their 217 female lung cancer sample had
depressed mood and 36% had conceptualizations of negative
meanings of illness. Seventy-five per cent of this sample identified
that the emotional distress, family distress and impact on sexual
functioning associated with their illness and sequelae lowered their
quality of life. Chapple, Ziebland and MacPherson (2004) described
how stigma associated with lung cancer has a profound effect on
those living with the disease. Additionally, Sarna et al. (2004)
reported 71% of 142 five-year survivors of lung cancer described
themselves as hopeful and 50% viewed the cancer experience as
contributing to positive life changes. In this study, primary predictors
of lower quality of life were ethnicity and depressed mood.
Dealing with the consequences of lung cancer and its treatment
can be taxing for the person and the family. Some people, given
appropriate information and therapeutic relationships with the cancer
care team, are able to mobilize their own resources to cope with their
cancer experiences; others require additional assistance. Very little is
known, however, about the range of assistance people require. Of
note, Bruera et al. (2001) demonstrated that patients (n=166) obtained
statistically significant psychosocial improvement when they
received assistance from a multidisciplinary team.
While some information is known about the supportive care needs
of patients with lung cancer, there is a paucity of knowledge about the
full range of needs for women living with lung cancer. Such
information is important for several reasons: 1) to plan a patient’s
individual care, 2) to make decisions about resource allocation, and 3)
to identify potential areas for improving the quality of care delivery.
aware of her rights regarding participation and the RA then invited the
patient to participate. Those who agreed to participate signed a
consent form in duplicate. The patient kept one copy and the RA
retained the other.
The RA gave each participating patient a self-report questionnaire
(Supportive Care Needs Survey) to complete and assessed if the
patient required assistance to complete the form. If a patient required
assistance (e.g., because of physical disability), the RA took the
patient to a quiet, private interview area and completed the
questionnaire through an interview format. For those patients who
agreed to complete the questionnaire by themselves during their clinic
visit, the RA checked back with the patient at a specified time to
collect the completed questionnaire. There was also a box in the clinic
for patients to leave completed questionnaires in a sealed envelope.
Finally, if a patient was unable to complete the questionnaire during
her clinic visit, the RA provided a pre-stamped, addressed return
envelope in which to return the questionnaire.
The measurement tool (i.e., Supportive Care Needs Survey) was
only available in English. Therefore, to minimize exclusion of
patients who did not speak, read, and/or write English, accompanying
family or friends who were fluent in the English language were
invited to explain the study to those patients and were asked to
provide translation if they and the patient both agreed. All answers
were completed on the form in English. The patient signed the
consent form and the translator also signed and made a notation that
the patient’s consent was voluntary. The RA kept track of how the
questionnaires were completed (by the patient directly, through an
interview format with the RA, or through an interpreter). There were
no differences noted between these groups in the analysis. The RA
also accessed patients’ charts to complete the demographic form and
to note when metastases were first diagnosed in patients.
Data collection and analysis
Patients initially completed a demographic information sheet that
had eight questions: age in years; marital status (married/living with
intimate partner, separated/divorced, widowed, single); highest level
of education completed (no formal schooling, primary school,
secondary or high school, college program, university program); type
of cancer; month and year when cancer first diagnosed; treatment
received for the cancer (radiation, chemotherapy, surgery, other); and
treatment currently being given for the cancer (radiation,
chemotherapy, surgery, other). Patients checked all that applied for
both treatment questions.
Subsequently, patients completed the Supportive Care Needs
Survey adapted for the lung cancer population. The instrument that
formed the basis for the actual questionnaire used in this study was
the Supportive Care Needs Survey originally developed and validated
in Australia (Bonevski et al., 2000). This tool contains 60 closedended items, and patients respond on a five-point scale. The scale
reflects various levels of need ranging from 1 = “No need,” (i.e., item
not a problem for the patient as a result of having cancer), to 5 =
“Some need” with a high need for help, (i.e., the item was of major
concern or importance to the patient and the patient had a strong need
for additional help with the problem or issue). The measurement tool
can be readily comprehended by individuals with minimal education
and can be completed in about 20 minutes (Bonevski et al., 2000).
A principal components factor analysis (Bonevski et al., 2000)
revealed needs grouped under five factors: 1) psychological—needs
related to emotions and coping; 2) health system and information—
needs related to the treatment centre and information about the
disease, treatment, and follow-up; 3) physical and daily living—needs
related to coping with physical symptoms, side effects of treatment,
and performing usual physical tasks and activities; 4) patient care and
support—needs related to health care providers showing sensitivity to
physical and emotional needs, privacy, and choice; and 5) sexuality—
needs related to sexual relationships. Cronbach’s alpha coefficients
The immediate purpose of this cross-sectional, descriptive study
was to identify the needs (physical, emotional, social, spiritual,
psychological, and practical) of women with lung cancer who attend
a comprehensive, ambulatory cancer centre. A further purpose was to
explore the emotional distress they perceived because of any unmet
needs they were experiencing.
Purpose
Procedure
The study commenced once ethical approval had been received
from both the site and one researcher’s university. A research
associate (RA) consulted with staff in the lung clinic to identify
potential participants. Any patient attending the lung clinic was
eligible for participation given they were 18 years or older, had a
diagnosis of lung cancer, and had no evidence of brain metastases or
undue emotional distress. Patients were approached in the reception
area of the clinic by the RA who explained the study objectives and
methods. Verbal information was given to ensure the patient was
Method
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centre each month. Similar to the clinic population, the sample was
older with more than 80% over the age of 60 years. Most patients
were married (n=24), more than one-third had at least a college level
education (n=10), and 44% had been diagnosed between one and two
years (see Table One). About 92% reported they were currently on
treatment. Treatments included chemotherapy, radiotherapy, surgery,
or a combination of these modalities.
for the five factors ranged from 0.87 for sexuality to 0.97 for
psychological. Four other items were not associated with a specific
factor loading: transportation, other people’s attitudes toward the
patient, finances, and talking with other individuals.
The measurement tool was revised for use with lung cancer
patients in the current study. A pilot test of the original Bonevski tool
with lung cancer patients at the centre resulted in reordering of some
questions for improved clarity. Slight wording changes were also
necessary to reflect the current Canadian setting. For example,
“hospital” was changed to “cancer centre.” The Supportive Care
Needs Survey covers the seven domains of supportive care over 61
items: emotional (11 items), informational (nine items), physical
symptoms (11 items), practical (seven items), psychological (11
items); social (five items), and spiritual (seven items). Reliability
results for the lung cancer group in this study were encouraging, with
subscales (the domains) reported at 0.66 to 0.90, with 6/7 being 0.80
or higher. Analysis in this study was descriptive and focused on item
frequency and subscale scores.
Issues currently experienced
In answering the survey, patients reported the issues they were
experiencing at that point in time. The women in this study reported
experiencing issues across all seven domains. Virtually all items were
mentioned by at least one person. The number of patients reporting an
issue ranged from n=1 (social—“family and friends to be allowed
with you in hospital whenever you want”) to n=28 (psychological—
“fear of cancer spreading”). All domains, with the exception of the
information domain, had at least one item where a third or more of the
women reported experiencing an issue.
Results
Sample
A convenience sample of 34 women participated in the study by
completing the Supportive Care Needs Survey. This represents
approximately one-third of the women seen in the clinic at the cancer
Table One. Demographic variables:
Women patients with lung cancer (n=34)
Variable
Finding
Number
Marital Status
Married
Separated/Divorced/Widowed
24
10
Age
Education Level
Length of Time
Since Diagnosis
<50 years
50–70 years
<70 years
<College
College
<1 year
1–2 years
2+ years
Table Two. Physical domain items (N=34)
Item
Lack of energy
Not being able to do the things you used to do
Shortness of breath
Not being able to work around the house
Feeling unwell
Coughing
Pain
Changes in sexual function
Decreased appetite
Nausea/vomiting
Cancer Centre staff attend promptly to needs
CONJ • 18/1/08
Physical needs
Six items were reported as issues for more than a third of the
women: lack of energy (n=23); not being able to do things you used
to do (n=22); shortness of breath (n=17); not being able to work
around the home (n=17); coughing (n=14); and feeling unwell (n=14)
(see Table Two).
Emotional needs
More than a third of the women reported experiencing issues
concerning five items: feeling down or depressed (n=18); feelings of
sadness (n=16); anxiety (n=16); feeling bored and/or useless (n=14);
and worry that the results of your treatment are beyond your control
(n=13) (see Table Three).
4
20
10
Psychological needs
The six items where more than a third of the women reported a
current issue were: fears about cancer spreading (n=28); fears about
cancer returning (n=25); fears about pain (n=18); fears about physical
disability or deterioration (n=14); fears about losing your
independence (n=13); and learning to feel in control of your situation
(n=12) (see Table Four).
24
10
4
15
15
Women without
concerns
Number
11
12
17
17
20
20
23
23
24
31
31
Women with concerns
Low distress
%
Number
32.4
10
35.3
9
50.0
10
50.0
3
58.8
10
67.6
3
58.8
7
67.6
8
70.6
7
91.2
2
91.2
1
3
%
29.4
26.5
29.4
Moderate distress
Number
7
11
7
8.8
12
23.5
3
29.4
20.6
8.8
20.6
5.9
2.9
3
6
%
20.6
32.4
20.6
35.3
8.8
17.6
8.8
6
17.6
1
2.9
1
–
2.9
–s
High distress
Number
%
6
17.6
2
5.9
2
–
1
1
–
2
2
1
1
5.9
–
2.9
2.9
–
5.9
5.9
2.9
2.9
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Most frequently reported item and self-identified distress
The 10 most frequently reported issues (more than 50% of
patients) were from the physical domain (lack of energy, not being
able to do things you used to do, not being able to work around the
home, shortness of breath), the psychological domain (fears about
cancer spreading, fears about cancer returning, and fears about pain)
the social domain (concerns about the worries of those close to you),
the spiritual domain (uncertainty about the future), and the emotional
domain (feeling down or depressed) (see Table Nine).
The women who reported experiencing an issue were asked to
indicate how much distress they felt because of the particular issue.
Tables Two to Nine present the amount of distress reported for each
of the items in terms of low, moderate or high intensity. Of note, in
nine out of the 10 most frequently reported items, feelings of
moderate to high distress were reported in more than 50% of those
who reported difficulty with the item.
Spiritual needs
Only one item from the spirituality domain was reported as a
current issue by more than one-third of the patients: feeling
uncertainty about the future (n=19) (see Table Five).
Social needs
“Concerns about the worries of those close to you” (n=19) was the
only item rated as a current issue by more than a third of the women
(see Table Six).
Informational needs
None of the items in the informational domain were experienced as
issues by more than a third of the women with lung cancer. The item
most frequently identified as an issue was, “to be informed about the
things you can do” (n=9) (See Table Seven).
Practical needs
Only one item in this domain was reported as an issue by more than
a third of the women: changes in usual routine and lifestyle (n=14)
(see Table Eight).
Table Three. Emotional domain items (N=34)
Item
Number without
concerns
Number
%
18
52.9
Feeling down
16
Feeling bored and/or useless
20
Anxiety
Feelings of sadness
Worry that results of treatment
are beyond control
Anxiety about having any treatment
Changes in sexual relationships
To have a member of the cancer centre
staff with whom you can talk
The opportunity to talk to someone
who understands and has been through
a similar experience
To be treated like a person, not a case
Cancer centre staff to acknowledge and
show sensitivity to your feelings
Table Four. Social domain items (N=34)
Item
Concerns and worries about those close to you
18
21
23
25
29
Talking with other people about cancer
Family and friends to be allowed with you
CONJ • 18/1/08
Women with concerns
Low distress
Number
5.9
58.8
6
17.6
5
14.7
3
52.9
7
7
61.8
5
67.6
73.5
85.3
20.6
14.7
Number
67.8
20.6
1
2.9
2
88.2
97.1
1
4
%
7
3
82.4
5
14.7
–
Low distress
8.8
5.9
2.9
20.6
14.7
8.8
2.9
20.6
5
2
11.8
Women with concerns
44.1
7
2.9
8.8
1
%
7
17.6
4
91.2
20.6
6
3
Number without
concerns
33
2
3
3
30
%
20.6
91.2
28
Number
7
31
15
%
23.5
1
Number
Number
High distress
8
85.3
31
%
Moderate distress
47.1
29
Concerns about those close to you caring for you 23
Changes in people’s attitudes and behaviours
This exploratory study was undertaken to describe the full range of
supportive care needs of women with lung cancer. Given the
Discussion
3
1
2
8.8
5.9
2
5.9
–
–
–
5.9
%
3
8.8
–
8.8
5.9
2.9
14.7
3
2
8.8
2.9
5
4
3
5.9
1
Moderate distress
Number
2
8.8
11.8
8.8
–
–
–
–
–
High distress
Number
%
7
20.6
–
–
4
1
–
11.8
2.9
–
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Table Five. Psychological domain items (N=34)
Item
Fears about cancer spreading
Fears about cancer returning
Fears about pain
Fears about physical disability
Fears about losing your independence
Learning to feel in control of situation
Accepting changes in appearance
Reassurance by medical staff that the...
To have access to professional counselling
To be treated in a hospital or cancer centre
More fully protected rights to privacy
Table Six. Information domain items (N=34)
Item
To be informed about the things you can do
To be given written information about
important aspects of your care
To be given information about aspects
of managing your care
To be informed about lab test results ASAP
To be informed about support groups
To be given explanations of tests
To be informed about cancer under control
Adequately informed about benefits of treatment
To be given information about sexual relations
Table Seven. Spiritual domain items (N=34)
Item
Uncertainty about the future
Feelings about death and dying
Keeping a positive outlook
Confusion about why this is happening to me
Finding meaning in this experience
Making the most of your time
Cancer centre staff convey a sense of hope
CONJ • 18/1/08
Number without
concerns
Number
%
16
47.1
6
9
20
21
22
25
29
31
32
32
Women with concerns
Low distress
17.6
61.8
6
64.7
5
73.5
85.3
94.1
82.4
28
29
29
29
30
31
15
20
25
25
27
28
29
17.6
17.6
14.7
2
5.9
8.8
5.9
–
–
Women with concerns
Low distress
Number
73.5
4
76.5
82.4
85.3
3
8.8
3
85.3
4
88.2
2
91.2
11.8
14.7
2
85.3
%
5
1
1
Number without
concerns
Number
26.5
14.7
2
94.1
35.3
5
3
91.2
28
26
23.5
6
Number without
concerns
25
8
9
58.8
%
%
12
26.5
Number
Number
2.9
5.9
8.8
11.8
5.9
2.9
Women with concerns
Low distress
%
44.1
Number
%
4
11.8
9
58.8
5
73.5
73.5
2
79.4
6
82.4
1
85.3
2
5
26.5
14.7
5.9
17.6
2.9
5.9
Moderate distress
Number
%
6
17.6
9
9
4
2
26.5
26.5
11.8
5.9
6
17.6
1
2.9
2
2
–
2
5.9
5.9
–
5.9
Moderate distress
Number
4
3
5
3
2
2
1
2
2
%
11.8
8.8
14.7
8.8
5.9
5.9
2.9
5.9
5.9
Moderate distress
Number
6
%
17.6
1
17.6
–
–
4
4
3
2
11.8
11.8
8.8
5.9
High distress
Number
7
7
4
4
%
20.6
20.6
11.8
11.8
5
14.7
–
–
1
2
–
–
–
2.9
5.9
–
–
–
High distress
Number
1
–
–
–
1
–
–
–
–
%
2.9
–
–
–
2.9
–
–
–
–
High distress
Number
%
4
11.8
3
8.8
3
1
1
2
1
8.8
2.9
2.9
5.9
2.9
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In addition to physical issues, psychological, social, and emotional
issues were among the most frequently reported items for the women
at the time of the survey. Some of these issues have been reported by
authors (Bradley, Davis, & Chow, 2005; Bruera et al., 2001; Kennett
& Payne, 2005; Solano & Higginson, 2006). However, because of the
instrument items, it was not clear in this study whether the patients’
issues had not been identified by the primary health care team at all,
or if they had been identified and were in the process of being
resolved. Asking an additional question to clarify this point may be a
consideration in future studies.
There is growing evidence that psychosocial intervention may
improve well-being and survival for patients with cancer (Chow,
Tsao, & Harth, 2004; Kennett & Payne, 2005). Hence, it is
imperative that attention is paid to this area. The focus of care must
be centred on the whole person rather than only on tumour care and
symptom management. At the very least, a discussion with patients
could lead to a shared understanding between patient and provider
about what would be most helpful from the patient’s perspective.
Health care providers need to acknowledge psychological issues,
such as fears about physical disability or deterioration, as well as
physical issues. They need to ensure open dialogue and
communication with patients so they can direct people to
appropriate resources for help. The appropriateness of the referral
methodology of the study, the data provide a picture of the potential
burden of need this patient population may be carrying at a point in
time. Clearly, the women were experiencing more than physical
issues and were experiencing a range of issues simultaneously. In
addition, a sizeable proportion were experiencing high distress
because of the issues they were trying to manage.
Many of the individual physically-oriented items identified in this
study have been reported in other publications: lack of energy or
fatigue (Bradley et al., 2005), pain (Bruera et al., 2001),
breathlessness (O’Driscoll, Corner, & Bailey, 1999), and inability to
carry out daily activities or do what one would like to do (Kenneth &
Payne, 2005). Voogt et al. (2005) linked a lack of positive emotions
in 105 cancer patients to an inability to engage in meaningful
activities and a reduction in cognitive and social functioning, as well
as to more fatigue. Overwhelming fatigue affects a person’s ability to
carry out normal, everyday activities and the effect of the associated
losses can be devastating to a person’s well-being (Kennett & Payne,
2005). Additionally, there is research evidence available about how to
deal with fatigue and with breathlessness in lung cancer populations
(Corner, Plant, A’Hern, & Bailey, 1996). Although further research is
warranted, a significant challenge seems to be in the application of
this knowledge in the practice arena so that patients are not
experiencing unmet needs and the potential for reduced quality of life.
Table Eight. Practical domain items
Item
Changes in usual routine of lifestyle
Waiting a long time for clinic appointments
Concerns about financial situation
Number without
concerns
Number
20
23
25
Concerns about getting to and from cancer centre 26
More choice about which cancer
centre you attend
More choice about which cancer specialist
To be given choices about when you go in...
32
32
32
Women with concerns
Low distress
%
Number
58.8
67.6
Fears about cancer returning (Psy)
Lack of energy (Ph)
Not being able to do the things you used to do (Ph)
Uncertain about the future (Sp)
Concerns about the worries of those close to you (Soc)
Feeling down, depressed (Em)
Fears about pain (Psy)
Shortness of breath (Ph)
Not being able to work around the house (Ph)
17.6
2
2
76.5
94.1
94.1
94.1
%
14.7
5.9
3
8.8
2.9
1
11.8
5.9
–
1
2.9
Women currently experiencing
issue in sample (n=34)
28
25
23
3
8.8
3
8.8
1
2.9
2.9
1
2.9
High distress
Number
3
4
%
8.8
11.8
4
11.8
–
–
3
1
–
8.8
2.9
–
Of those with an issue, % who
have moderate to high distress
57.1
64.0
56.5
22
59.1
19
52.6
19
63.2
18
55.6
18
55.6
17
17
Note: Ph = physical; Soc = social; Psy = psychological; Em = emotional; Sp = spiritual
CONJ • 18/1/08
Number
5
–
1
Table Nine. Most frequently identified current issue and distress
Fears about cancer spreading (Psy)
6
4
73.5
%
Moderate distress
6
41.2
82.4
RCSIO • 18/1/08
doi:10.5737/1181912x18118
needs to relate to the extent to which an issue is being experienced,
and whether or not a patient wants help with the issue at that point
in time.
Structures and processes need to be in place to easily identify
patient issues. The instrument used in this current study provided the
necessary type of comprehensive assessment across the spectrum of
supportive care needs. Use of such a standardized tool facilitates the
identification of issues the patient may be experiencing. Professionals
should not make the assumption that an issue does not exist just
because it is not raised by the patient. Recent work has revealed that
many patients do not raise issues with health care providers despite
being concerned about them (Fitch, Ung, Winterhoff, & Steele, 2002).
This type of comprehensive research tool may be cumbersome for use
in the busy clinical setting. However, by taking the most frequently
identified items, a shorter version of the instrument could be
developed for use as a screening device. A screening or triage tool
could be more easily administered in a waiting room area and the
results shared with the clinical team during the appointment time to
initiate conversation about what help the person would like and
appropriate intervention and/or referral could be made.
One of the shortcomings of the data in this work is clarity around
the proportion of women with lung cancer who would actually like
help for an issue they are currently experiencing. Clinical observation
would indicate that all patients who are currently experiencing an
issue might not want help for the issue at a particular point in time or
from staff at the cancer centre. They may be receiving assistance from
another health care agency and feel they are in the process of
resolving the issue. Future investigations ought to incorporate items
or data collection approaches to clarify the person’s perspectives
about wanting assistance. This becomes important as the basis for
future planning and resource allocation.
It is disturbing to observe the high proportion of women with lung
cancer who expressed moderate to high distress related to issues they
were currently experiencing. The data emphasize the need for
appropriate resources and interventions to be available. In some areas,
centres might be able to employ staff, such as an advanced practice
nurse, to provide some of the care required. The results from this
current study illustrate that issues are present and provide a basis of
support for supportive care initiatives that would identify
interventions and develop evidence-based protocols. For example, an
in-depth literature review could be conducted to first explore the top
three patient issues identified in this study and then develop local
interventions for these issues that are tested through a randomized
clinical trial (RCT) to compare standard care against the intervention.
Finally, patients could be followed in a longitudinal study to assist in
identifying which interventions worked and why.
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Women with lung cancer may have a number of unmet needs for
which they require assistance. It is important to identify those needs
as efficiently and effectively as possible so that patients can be
provided with appropriate resources for help. Physical needs such as
lack of energy and pain are experienced by the majority of these
women, but emotional, psychological, social, spiritual, practical, and
informational needs are also present for some. Interventions must be
developed to assist women with lung cancer as they cope with these
needs.
Conclusion
Funding for this study was provided by the Ontario Lung Association
through an Ontario Respiratory Care Society Research Grant.
Acknowledgement
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