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Lung Cancer 72 (2011) 384–390
Contents lists available at ScienceDirect
Lung Cancer
journal homepage: www.elsevier.com/locate/lungcan
Illness perceptions and quality of life in Japanese and Dutch patients with
non-small-cell lung cancer
Ad A. Kapteina,∗, Kazue Yamaokab, Lucia Snoeia, Kunihiko Kobayashic, Yuka Uchidac,
Willem A. van der Klootd, Toshio Tabeie, Wim Chr. Kleijna, Mariska Kosterf, Giel Wijnandsf,
Hans Kaajanf, Tommy Tranf, Kenichi Inouee, Rik van Klinkg, Eva van Dooren-Coppensg, Hans Dikh,
Fumi Hayashii, Luuk Willemsj, Dunja Annema-Schmidtj, Jouke Annemaj, Bas van der Maatj,
Klaas van Kralingenj, Corrie Meirinkk, Kyoji Ogoshil, Neil Aaronsonm, Hans Nortiern, Klaus Rabej
aUnit of Psychology, Leiden University Medical Centre (LUMC), PO Box 9600, 2300 RC Leiden, The Netherlands
bDepartment of Technology Assessment and Biostatistics, National Institute of Public Health, Saitama, Japan
cDepartment of Respiratory Medicine, Saitama International Medical Center, Hidaka City, Japan
dPsychology Institute, Leiden University, The Netherlands
eSaitama Cancer Centre, Saitama, Japan
fDepartment of Respiratory Medicine, Deventer Ziekenhuis, Deventer, The Netherlands
gDepartment of Respiratory Medicine, Diaconessenhuis, Leiden, The Netherlands
hDepartment of Respiratory Medicine, Rijnland Ziekenhuis, Leiderdorp, The Netherlands
iToyo Eiwa University, Japan
jDepartment of Respiratory Medicine, Leiden University Medical Centre (LUMC), Leiden, The Netherlands
kDepartment of Surgery, Diaconessenhuis, Leiden, The Netherlands
lDepartment of Surgery, School of Medicine, Tokai University, Kanagawa, Japan
mDepartment of Psychosocial Oncology, Antoni van Leeuwenhoekhuis, Amsterdam, The Netherlands
nDepartment of Clinical Oncology, Leiden University Medical Centre (LUMC), Leiden, The Netherlands
article info
Article history:
Received 22 June 2010
Received in revised form 31 August 2010
Accepted 14 September 2010
Keywords:
Non-small-cell lung cancer
Psychosocial research
Quality of life
Illness perceptions
Cross-cultural comparison
abstract
This study examined quality of life (QOL) and illness perceptions in Dutch and Japanese patients with non-
small-cell lung cancer, thereby extending the body of knowledge on cultural differences and psychosocial
aspects of this illness.
24 Dutch and 22 Japanese patients with non-small-cell lung cancer filled out questionnaires on three
occasions: immediately before chemotherapy, 1 week later, and 8 weeks after the initial chemotherapy.
The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC
QLQ-C30) assessed QOL, and the Brief Illness Perception Questionnaire (B-IPQ) illness perceptions.
Scores on several QOL measures indicated (a) major impact of first chemotherapy sessions, and (b)
some tendency to returning to baseline measures at 8 weeks. Differences between Japanese and Dutch
samples were found on five EORTC QLQ-C30 dimensions: global health status, emotional functioning,
social functioning, constipation, and financial difficulties, with the Dutch patients reporting more favor-
able scores. Regarding illness perceptions, Japanese patients had higher means on perceived treatment
control and personal control, expressing a higher sense of belief in the success of medical treatment than
Dutch patients.
In both Japanese and Dutch patients, impact of chemotherapy on QOL was evident. Some differences
in illness perceptions and QOL between the two samples were observed, with implications for integral
medical management. Both samples reported illness perceptions that reflect the major consequences of
non-small-cell lung cancer. Incorporating symptom reports, illness perceptions, and QOL into medical
management may have positive consequences for patients with non-small-cell lung cancer.
© 2010 Elsevier Ireland Ltd. All rights reserved.
∗Corresponding author. Tel.: +31 71 526 2905; fax: +31 71 524 8123.
E-mail address: a.a.kaptein@lumc.nl (A.A. Kaptein).
1. Introduction
Behavioural aspects of lung cancer are increasingly being stud-
ied. In this journal, psychosocial aspects of lung cancer have been
reviewed by Carlsen et al. [1], where the authors concluded that
major psychosocial problems are highly prevalent, and that these
0169-5002/$ – see front matter © 2010 Elsevier Ireland Ltd. All rights reserved.
doi:10.1016/j.lungcan.2010.09.010
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A.A. Kaptein et al. / Lung Cancer 72 (2011) 384–390 385
problems can be reduced to some degree by psychosocial interven-
tions. Graves et al. [2] reported very high levels of distress in a large
sample of patients with lung cancer, as well as a fairly large inter-
est among those patients in receiving help with the distress and/or
symptoms. Recently, papers have been published on psychomet-
rics of measures of quality of life, pain, and denial in the area of
lung cancer [3–6].
Quality of life is a concept that traditionally has been used in
oncology to cover the functional effects of cancer and its treat-
ment, as perceived by the patient. The number of publications on
“quality of life AND lung cancer” (i.e., 3375 on 28 August 2010)
reflects the quite impressive body of knowledge that is available.
More recent studies on behavioural aspects of lung cancer, how-
ever, tend to go beyond the concept of quality of life. Modern theory
and their clinical applications in psychology as applied to medicine
focus on self-management and self-regulation. The Self-Regulation
Model (SRM), developed by Leventhal et al. [7] encompasses ill-
ness perceptions and coping as determinants of quality of life. In
essence, the SRM maintains that persons/patients respond to a
threat or an illness by forming perceptions about that threat or ill-
ness, as well as a coping plan to deal with the consequences of the
threat or illness. Illness perceptions can be categorized into empir-
ically supported dimensions: identity (i.e., the complaints a patient
attributes to his/her illness, such as fatigue, shortness of breath),
consequences (i.e., consequences on the patient’s life; the way oth-
ers see the patient; difficulties for those close to the patient), causes
(i.e., stress; weather; air pollution), cure/control (separated into per-
sonal control, and treatment control, i.e., chemotherapy; surgery;
complementary medication; prayer), timeline (i.e., acute versus
chronic illness versus cyclical illness; curable versus incurable, etc.)
[8]. Recently, coherence (i.e., the degree to which the patient feels
she/he can make sense of the threat or illness) and emotional con-
sequences (i.e., distress; anxiety; depression) have been added as
additional dimensions [9].
Illness perceptions can be assessed with standardized question-
naires (e.g., IPQ [8], IPQ-R [9], and B-IPQ [10]) and/or drawings
[11]). In a recent meta-analysis of research on illness perceptions it
was shown how illness perceptions predict outcomes in various
categories of chronic physical disorders [12]. The first interven-
tion studies applied cognitive-behavioural methods to elicit and
change illness perceptions, and demonstrated the effectiveness of
this approach in producing positive behavioural and psychological
outcomes in patients with a myocardial infarction [13], pain [14]
or SLE [15].
In lung cancer, illness perceptions have been examined only
recently. A 26 August 2010 literature search in PubMed on “ill-
ness perceptions AND lung cancer” identified 38 references, 15 of
which represent empirical studies on illness perceptions proper
[3,16–29]). Excluded were papers that did not report empirical data
on the topic or that reported on views of health care providers about
living with lung cancer. Papers not in English were also excluded.
A summary of the15 studies on illness perceptions in patients with
non-small-cell lung cancer is presented in Table 1.
Sample sizes vary between 9 and 170 patients, with eight studies
combining patients with small-cell lung cancer and non-small-
cell lung cancer. About half of the studies have a cross-sectional
design, the others have a prospective design. Qualitative methods
(i.e., interviews) were the dominant method with which data were
collected. Findings show a wide range of emotional and cognitive
consequences in the patients. Over time, patients tend to report less
perceived control and more emotional worries. Finding meaning in
the illness, its treatment, its outcome, and relationships between
the patient and loved ones and health care providers were other
themes.
There is evidence that illness perceptions and quality of life
are influenced by cultural background, and Dein, among others,
highlighted the cultural determinants of symptom perception and
symptom attributions [30,31]. However, in an earlier study we
found that Japanese and Dutch patients with various types of can-
cer (breast, colon, lung, and prostate) responded in a quite similar
way to a fairly large set of quality of life questionnaires; differ-
ences were found mainly on the social dimension of quality of life
[32].
The primary aim of our paper, therefore, was to explore illness
perceptions in Dutch and Japanese patients with non-small-cell
lung cancer (NSCLC), and to examine differences in illness percep-
tions between Japanese and Dutch patients. Secondly, we examined
potential differences between Japanese and Dutch non-small-cell
cancer patients in their self-reported quality of life scores. These
two aims follow from our earlier collaborative research project on
QOL in Japanese and Dutch patients [32], and include the subject of
illness perceptions in the current study. The longitudinal design in
the current study allowed the examination of changes in QOL over
time in both patient groups.
2. Patients and methods
This prospective study was performed in 22 Japanese and 24
Dutch patients, whose medical data are reported in Results. Patients
provided informed consent, after having been identified during
clinical meetings of the treating physicians, and having received
a pathologically confirmed diagnosis of non-small-cell lung car-
cinoma. Clinical data were collected by nurse-practitioners and
research associates. Patients were informed that the purpose of
the study was to explore reactions of patients with non-small-cell
lung cancer to their illness and its treatment. Patients in both the
Netherlands and in Japan were informed about their diagnosis by
their physician. Patients with evident psychiatric illness, according
to the physicians treating the patient, and patients unable to fill out
the questionnaires due to low health literacy were excluded. Their
NSCLC was in stage 3 or 4.
Patients filled out a questionnaire booklet before their first
chemotherapy cycle, 1 week after their first chemotherapy cycle,
and 8 weeks after the start of chemotherapy. The booklets con-
tained several questionnaires, including the European Organization
for Research and Treatment of Cancer Quality of Life Questionnaire
(EORTC QLQ-C30; [33]) and the Brief Illness Perception Question-
naire (B-IPQ [10]). In addition, several clinical data were collected.
The EORTC QLQ-C30 is a quality of life questionnaire contain-
ing 30 questions organized into a number of scales, including a
global health status scale, 5 functional scales, and 9 symptom scales.
The scores are expressed on a 0–100 scale. For the general health
and functional scales, higher scores indicate better general health
and functioning. For the symptom scales, higher scores indicate
worse symptoms. The Japanese version of the EORTC QLQ-C30 was
developed following rigorous EORTC translation procedures and
has been validated [32–37].
The B-IPQ consists of 8 questions that measure 8 dimensions
of illness perception (see Introduction) on a scale of 1–10. The
Japanese version was adapted from www.uib.no/ipq, Japanese B-
IPQ.
Physicians rated the Karnofsky scores of the patients before the
first chemotherapy cycle.
Statistical analyses pertain to comparing the two samples within
and between three assessment times. Student t-tests and repeated
measures analysis of variance (ANOVAs) were applied.
The research project was approved by the Medical Ethical Com-
mittee of the Leiden University Medical Centre, and by the Internal
Review Board of the Saitama International Medical Centre, Hidaka
City, Japan. The study protocol was used in both locations in an
identical fashion.
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386 A.A. Kaptein et al. / Lung Cancer 72 (2011) 384–390
Table 1
Summary of 15 studies on illness perceptions in patients with non-small-cell lung cancer and small cell lung cancer.
First author
Year of publication
Country of origin
Reference
Number of patients;
Type of cancera
Study design Major results
Browning
2009
USA
[3]
52
Mixed
Prospective 1-group descriptive longitudinal; IPQ-R at
baseline, 2–4 weeks, 6 months
‘Identity’ and ‘timeline’ increased over time; ‘personal
control’ and ‘treatment control’ decreased over time
Buchanan
2010
UK
[16]
170
Mixed
Prospective observational Increased worry in patients is associated with patient
perceptions of increased anxiety in their social network
Chapple
2004
UK
[17]
45
Mixed
Qualitative: narrative interviews Patients experienced high levels of stigma because of the
association of lung cancer with smoking. Concealing the
illness was a coping strategy that patients used
Dias
2006
Brazil
[18]
11
Mixed
Qualitative: exploratory interviews Patients resented the glorious image of smoking cigarettes.
Cancer outcome was attributed to other respiratory
illnesses, and to mystical, religious factors
Downe-Wamboldt
2006
Canada
[19]
85
NSCLC
Cross-sectional; interview data from patients and
family members
Perception of illness manageability determines quality of
life mainly. Considerable concordance in illness meaning
in patients and their family members
Hay
2007
USA
[20]
122
NSCLC
Prospective observational Cancer related risk perception predicted post-cancer
diagnosis smoking patterns
Lai
2007
Hong Kong
[21]
11
NSCLC
Qualitative: in-depth interviews Characteristics of dyspnea, dyspnea impact, dyspnea
managing strategies, and the nurses’ role in dyspnea
management were the major themes in the patients.
Patients reported dissatisfaction with health care
practitioners’ role in assisting with dyspnea
Leveälahti
2007
Sweden
[22]
37
Mixed
Narrative analysis of qualitative interviews Symptoms leading to diagnosis varied widely. Biographical
disruption quite often associated with allowing for
integration of past and present aspects of patients’ lives
(biographical continuity)
Lobchuk
2008
Canada
[23]
100
Mixed
Cross-sectional study on attributions for lung cancer in
patients and their partners
Patients and support persons ascribed more negative
attributions toward oneself, and more positive attributions
towards their partner
Porter
2002
USA
[24]
30
Mixed
Interviews on concordance between patients and
primary family care givers regarding their perceptions
of patients’ self efficacy for managing pain and other
symptoms
Considerable variability in degree of concordance. A poorer
quality of relationship between caregiver and patient, high
levels of patient-rated symptoms, and high levels of
caregiver strain were associated with caregivers
overestimating patient self-efficacy
Salander
2007
Sweden
[25]
23 Repeated interviews throughout the course of the
disease
Smoking was not seen as the prime cause of cancer in the
patients
Sanders
2010
USA
[26]
109
Mixed
Cross-sectional study on prevalence and correlates of
intensity of supportive care needs
High prevalence of unmet needs in the physical, daily
living and psychological domain. Higher levels of
supportive care needs are associated with more difficulties
regarding the illness
Sarna
2005
USA
[27]
217
NSCLC
Qualitative: in-person interviews Serious disruptions in psychological and social aspects of
quality of life. Negative meaning of illness, depressed
mood, distress, family distress, sexual problems were
highly prevalent
Sharf
2005
USA
[28]
9
NSCLC
Qualitative: in-depth interviews Patients refusing physicians’ recommendations
emphasized self-efficacy, minimizing threat, distrust of
medical authority
Yardley
UK
2001
[29]
13
Mixed
Qualitative: semi-structured interviews Communication, family/community issues, reaction to
diagnosis, views on treatment and prognosis, and
suggested improvements were the five themes identified
aNon-small-cell lung cancer (NSCLC) and small cell lung cancer =mixed.
3. Results
Respondents consisted of 22 Japanese patients (17 males, 5
females; mean age and standard deviation (SD): 63.0 ±6.64 years)
and 24 Dutch patients (16 males, 8 females; mean age and SD:
63.3 ±9.69 years). Table 2 summarizes clinical data for both sam-
ples, including type of cancer, TNM stage of cancer, and Karnofsky
ratings by physicians. The preponderance of male patients is worth
noting, and is common in lung cancer studies. As the distribution
of males/females is virtually identical (2= 0.637; p= 0.425), differ-
ences observed between the two samples in the outcomes being
assessed cannot be attributed to gender differences. Differences
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A.A. Kaptein et al. / Lung Cancer 72 (2011) 384–390 387
Table 2
Summary of clinical data of Japanese (n= 22) and Dutch (n=24) patients.
Variable Categories Japan The
Netherlands
Type of cancer Adeno 17 (77.3%) 11 (45.8%)
Squamous 5(22.7%) 13 (54.2%)
TNM stage of cancer IIIA 5 (22.6) 7 (29.2)
IIIB 7 (31.8) 7 (29.2)
IV 10 (45.5) 10(41.6)
Karnofsky score by
doctor (mean ±SD)
0 = deceased
100=no
complaints
87.37 ±12.40 91.43 ±8.54
for age and Karnofsky score were tested by means of t-tests. The
resulting p-values were 0.907 and 0.241, respectively, indicating
no significant differences. Type of cancer differed for Japanese and
Dutch patients (2= 4.697; p= 0.030), with relatively more adeno
cancer among the Japanese patients, and more squamous cell can-
cer among the Dutch patients. For stage of cancer no differences
were found (2= 0.708; p= 0.40).
Chemotherapy protocols were identical in both countries and
followed international guidelines [38]. All Japanese patients under-
went platinum based therapy except 1 patient who had a platinum
allergy reaction and 2 patients who received newer biological
agents. In the Dutch sample it is unknown how many patients
received other treatments than platinum base therapy.
Table 3 reports the means and standard deviations (SDs) of the
Japanese and Dutch patients on the subscales of the EORTC QLQ-C30
for the three assessment points. This table also displays the means
and SDs of a reference group of non-small-cell lung cancer patients,
reported in the 2008 reference value manual of the EORTC QLQ-C30
with the lists and the scale and item value for a great variety of can-
cer types, among which NSCLC [34]. As can be seen, for most of the
subscales the means of the Japanese and Dutch patients are rela-
tively close to those of the reference group. However, in the Dutch
patients 12 of the 18 means on the general health and functional
scales are more favorable than those of the reference group, com-
pared to 3 out of 18 in the Japanese patients. A similar result was
obtained for the symptom scales: 17 out of 27 means of the Dutch
patients indicated less severe symptoms than the reference group,
compared to 12 out of 27 in the Japanese patients. This difference
is statistically significant (2= 4.455; df = 1, p< 0.05).
Repeated measures ANOVAs using lower-bound sphericity esti-
mates were run on the Country by Occasion data of the 15 EORTC
Fig. 1. Mean values of emotional functioning, fatigue, and constipation for the
Japanese and Dutch patients combined, on three measurement occasions.
scales. As 8 Japanese patients had missing data on one or two
occasions, the results are based on 14 Japanese and 24 Dutch
patients. Significant differences between the Japanese and the
Dutch patients were found on global health status (p= 0.008),
emotional functioning (p= 0.005), social functioning (p= 0.001),
constipation (p= 0.012), and financial difficulties (p< 0.001), with
the Dutch patients having significantly more favorable average
scores on all five variables (Fig. 1).
Differences over time were observed for physical functioning,
(p= 0.027), emotional functioning (p= 0.030), fatigue (p= 0.038),
constipation (p= 0.007), and financial difficulties (p= 0.017). For
physical functioning, and financial difficulties, the time effect
reflected an interaction between country and time (see Fig. 2
and below). For emotional functioning, fatigue, and constipation,
the average scores on the first measurements were significantly
different from the means on the following two occasions. This
shows that symptoms of fatigue and constipation increase after
chemotherapy. At the same time, emotional functioning improved
Table 3
Means and SDs of reference standard, and Japanese and Dutch patients on the EORTC-QLQ-C30 subscales, at three occasions.
EORTC QLQ C30 subscale Reference standardaJapan The Netherlands
Occasion Occasion
1n=22 2 3 1 n=24 2 3
Global health statusb58.8 (22.5) 50.8 (22.4) 50.0 (18.4) 51.8 (30.7) 71.2 (24.2) 66.3 (20.7) 61.6 (23.8)
Physical functioningb78.4 (19.3) 78.0 (16.2) 77.0 (17.9) 76.9 (17.6) 86.9 (14.1) 80.0 (17.9) 71.4 (17.5)
Role functioningb60.7 (33.1) 62.9 (32.9) 57.9 (24.5) 60.0 (28.0) 76.4 (25.5) 68.8 (25.2) 56.3 (27.3)
Emotional functioningb68.1 (24.2) 61.1 (25.7) 69.0 (17.5) 70.0 (11.9) 60.8 (28.3) 73.3 (27.3) 71.5 (25.3)
Cognitive functioningb84.0 (21.1) 71.2 (27.3) 77.0 (16.2) 76.7 (21.6) 81.9 (21.4) 83.3 (20.9) 83.3 (23.1)
Social functioningb73.6 (28.9) 47.7 (40.6) 59.5 (31.0) 54.8 (31.6) 86.1 (21.8) 83.3 (24.6) 75.7 (28.2)
Fatiguec40.4 (27.0) 38.4 (25.6) 38.1 (22.4) 42.2 (20.7) 26.9 (23.4) 41.7 (21.8) 44.9 (27.3)
Nausea and vomitingc9.7 (18.3) 4.5 (10.5) 18.3 (28.3) 8.9 (13.9) 4.9 (12.5) 15.3 (26.4) 20.1 (27.4)
Painc29.7 (30.3) 33.3 (29.5) 30.2 (25.1) 17.8 (20.4) 17.4 (24.3) 18.1 (25.0) 15.3 (25.0)
Dyspneac38.5 (31.7) 24.2 (23.4) 14.3 (16.9) 24.4 (19.8) 30.6 (32.5) 29.2 (26.6) 36.1 (32.5)
Insomniac32.4 (32.7) 37.6 (34.6) 42.9 (31.9) 22.2 (20.6) 26.1 (31.7) 27.8 (32.1) 29.2 (31.6)
Appetite lossc27.9 (33.5) 22.7 (31.5) 46.0 (37.2) 33.3 (41.8) 23.6 (37.4) 27.8 (36.3) 29.2 (33.1)
Constipationc17.4 (27.9) 16.7 (24.7) 41.3 (33.2) 35.6 (29.5) 5.6 (16.1) 22.2 (27.2) 15.3 (26.0)
Diarrhoeac6.8 (17.4) 15.2 (24.6) 3.2 (10.0) 8.9 (15.3) 9.7 (18.3) 6.9 (13.8) 13.9 (25.9)
Financial difficultiesc12.8 (25.8) 54.5 (31.8) 36.5 (34.8) 33.3 (29.2) 6.9 (17.0) 8.3 (22.5) 5.6 (16.1)
aFrom the EORTC QLQ-C30 reference value manual [34, p. 203].
bHigher scores indicate better health and functioning.
cHigher scores denote more pain and symptoms.
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388 A.A. Kaptein et al. / Lung Cancer 72 (2011) 384–390
Fig. 2. Interaction of country and occasion for physical functioning and financial
difficulties.
as well. It appears that, after chemotherapy, the patients adjusted
somewhat to the emotional upset related to the diagnosis of lung
cancer.
Interactions between country and time were found for physical
functioning (p= 0.034) and financial difficulties (p= 0.026). These
interactions are shown in Fig. 2. The significant interaction effect
for physical functioning is probably due to the decrease of the
Dutch patients on Occasion 3 (p= 0.010), which breaks the parallel
time pattern of the two groups. The interaction on financial dif-
ficulties is reflects the lower means on Occasions 2 and 3 for the
Japanese patients, while the Dutch patients had continuously low
mean scores on all measurements.
Table 4 displays the means, SDs and standard errors of the means
(SE) of the Japanese and the Dutch patients on the 8 dimensions
of the B-IPQ. High means on consequences, timeline, and con-
cern indicate that the patients were fully aware of the seriousness
of their illness. t-Tests showed that Japanese patients perceived
more personal control and more treatment control than did their
Dutch counterparts (p= 0.047 in both cases). Dutch patients showed
more variability on Personal control and coherence (p= 0.022 and
p= 0.003, respectively). For the other IPQ-B dimensions the scores
of both groups are remarkably similar.
4. Discussion
A major finding of this theory-driven, empirical study on ‘illness
perceptions’ is the greater sense of psychological and medical con-
trol and impact that Japanese patients report compared to Dutch
patients. On all B-IPQ subscales, the Japanese patients had higher
means (although not significantly so, except in two cases). The
significantly higher mean on treatment control of the Japanese
patients seems to reflect the greater sense of trust in (bio)medical
care for lung cancer, and possibly, in health care in general in Japan
compared to the Netherlands [30]. Scores on the EORTC QLQ-C30
questionnaire showed a more or less similar pattern of impact of
chemotherapy on QOL in both samples. Over the course of the
chemotherapy sessions, scores on EORTC QLQ-C30 indicated sig-
nificant impairment on most subscales immediately after the first
course of chemotherapy, followed by a minor improvement on
some subscales. Overall, the QOL impact was similar between the
two samples.
The observation of some of the improvements in QOL-scores
was confirmed during the (telephone) contacts the first, third and
fifth author had with most patients to remind them to complete
the questionnaires. Patients appeared relieved and almost happy
that medical treatment had been initiated, and reported having
high expectations of its effects. We would note that this expressed
optimism sometimes appeared to reflect some degree of denial as
well [6]. Our observations are consistent with those of Murray et
al. where the different trajectories of (psychological) symptoms are
described in patients with advanced lung cancer [39].
The Self Regulation Model provides the conceptual basis of our
exploratory study [7,12]. Illness perceptions and outcomes such as
quality of life figure prominently in that model. Together with the
studies reviewed in Table 1, our work adds to the empirical tests of
the model. The studies that are summarized in Table 1 illustrate that
our study compares quite well with the extant literature: the num-
ber of patients, design and methods used to assess patient-reported
outcomes are similar in a broad sense to the studies reviewed in
Table 1.
Dutch patients reported a better quality of life than Japanese
patients on the EORTC QLQ-C30 dimensions, and somewhat lower
levels of symptomatology. This may reflect differences in response
style in Dutch and Japanese culture. It may also reflect differences
Table 4
Means, standard deviations (SDs), and standard errors of the means (SE) of the scores of the Japanese and Dutch patients on the eight dimensions of the IPQ-B.
IPQ-B dimension Japan The Netherlands p-Values
NMean ±SD
SE
NMean ±SD
SE
Differences
between means*
Differences
between SDs
Consequences 22 7.82 ±2.938
0.626
24 7.50 ±2.859
0.584
0.712 0.628
Time line 22 7.50 ±2.304
0.491
23 6.13 ±2.702
0.563
0.074 0.664
Personal control 20 5.75 ±2.425
0.542
24 3.88 ±3.603
0.736
0.047*0.022*
Treatment control 20 8.30 ±2.080
0.465
22 6.82 ±2.594
0.553
0.047*0.427
Identity 21 4.40 ±3.113
0.679
23 3.70 ±3.052
0.636
0.563 0.869
Concern 22 8.32 ±2.147
0.458
24 7.83 ±2.632
0.537
0.496 0.435
Coherence 22 6.77 ±1.926
0.411
24 5.58 ±3.450
0.704
0.153 0.003*
Emotional response 22 5.82 ±3.065
0.653
24 5.21 ±3.092
0.631
0.506 0.737
*p< .05.
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A.A. Kaptein et al. / Lung Cancer 72 (2011) 384–390 389
in how health care providers and the health care system respond
to patients’ suffering.
The topic of cross-cultural comparisons, methodologies, patient
response styles and physicians behaviour deserves a concise dis-
cussion. Culture determines how persons/patients respond to
illness [31,40]. Gotay et al. reported on differences between
Caucasian and Japanese respondents’ attitudes to disclosing the
diagnosis of ‘cancer’, and found that “... Japanese respondents
expressing a personal preference to be told if they themselves were
diagnosed with cancer, as did virtually all US respondents” (p. 665).
The Japanese senior physicians involved in our study embraced
western values regarding “telling the truth” to their patients about
their diagnosis. In a previous paper they also demonstrated how
socioeconomic factors impacted on cancer survivor’s worries and
QOL [41]. Further research into these issues clearly is warranted.
The two samples in our study were relatively small, and the
follow-up period was relatively short. Future studies with larger
sample sizes and longer follow-up periods are needed. Larger stud-
ies could also resolve the potential problem of limited statistical
power in the current study.
Recent papers have discussed the effects of psychosocial
interventions designed to improve the QOL of patients with non-
small-cell lung cancer [26,42–44]. They have assessed supportive
care needs [26,43], have used a rehabilitation format [42],or
a group psychotherapy approach intended to give meaning to
the illness [44]. Clearly, this type of research is in its infancy in
patients with non-small-cell lung cancer. In other diagnostic cancer
categories, researchers have addressed the issue of whether inter-
ventions aimed at influencing patient-reported outcomes translate
into gains in longevity [45,46]. A recent paper demonstrated that
patients who received early palliative care for metastatic non-
small-cell lung cancer had less aggressive care at the end of life
but longer survival [47]. Clearly these provocative findings require
replication.
Recent research also points to the relevance and importance of
the way in which health care services are organized in decisions
that patients take regarding surgery for lung cancer [48], and in
tracking the well-being and distress in family care givers of patients
with lung cancer [49]. A biopsychosocial approach to patients
with various types of lung cancer appears to hold promise for the
future.
Conflict of interest
None declared.
Acknowledgements
The authors are very grateful to two anonymous reviewers for
their constructive comments on an earlier version of the paper.
Supported by an unrestricted grant from Pfizer Japan Health
Research Trust.
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