715380

research-article2017
SJP0010.1177/1403494817715380A.F. Pedersen and P. VedstedCancer beliefs

Scandinavian Journal of Public Health, 1–7

Original Article

Cancer beliefs in cancer survivors, cancer relatives and

persons with no cancer experience

Anette Fischer Pedersen & Peter Vedsted

Research Centre for Cancer Diagnosis in Primary Care (CaP), Research Unit for General Practice, Aarhus University,
Denmark

Abstract
Aims: Negative cancer beliefs have been associated with late stage at cancer diagnosis. High levels of negative cancer beliefs
have been found among individuals with low socioeconomic position and ethnic minority women, but the impact of cancer
experience on cancer beliefs is unexamined. The aim of this study was to examine whether cancer beliefs are associated
with cancer experience. Methods: This was a cross-sectional population-based study. Telephone interviews of 2992 Danish
residents (30+) were carried out using the Awareness and Beliefs about Cancer Measure (ABC). Respondents reported
whether they or someone close had been diagnosed with cancer and whether they agreed/disagreed with three positively and
three negatively framed cancer beliefs. Results: Respondents with someone close diagnosed was reference group. Compared
with these, respondents with no cancer experience (RRadj=0.91, 95% CI=0.84–0.98) or who had had cancer themselves
(RRadj=0.87, 0.77–0.98) were less likely to believe that cancer treatment is worse than the cancer itself, and respondents
with no cancer experience were less likely to believe that a diagnosis of cancer is a death sentence (RRadj=0.83, 0.70–0.98),
but more likely to report that they did not want to know if they had cancer (RRadj=1.31, 1.01–1.71). Conclusions: The
results suggest that cancer beliefs are sensitive to cancer experience. This is an important addition to previous
results focusing on the association between cancer beliefs and static factors such as socioeconomic position and
ethnicity. Since cancer beliefs may determine health-related behaviour, it is important that negative cancer
beliefs are addressed and possibly reframed in population-based interventions.

Key Words: Cancer beliefs, cancer experience, Denmark, population-based, telephone interview

Introduction
A number of retrospective studies have documented
associations between negative beliefs about cancer
and late stage at diagnosis of lung cancer [1, 2],
breast cancer [3] and colorectal cancer [1] and lower
participation in breast cancer screening [4]. Cancer
beliefs are not clearly defined, but are often used as a
concept, which encompasses a person’s outlook on
cancer [5]. Negative and positive cancer beliefs seem
not to be opposites, as individuals can be high on
both [6]. In a qualitative study on beliefs about can-
cer, respondents’ first response often revealed
thoughts about fear, trauma or death, which were
often followed by an acknowledgement of that many
patients can survive and resume a normal life [7].
Some respondents reported that their first response
was a gut feeling and the second a more rational
appraisal.
Negative cancer beliefs have been shown to be
especially prevalent among individuals with low soci-
oeconomic status [6, 8], minority women with a non-
Western background [9] and smokers [10]. An
international comparison showed differences in

Correspondence: Anette Fischer Pedersen, Research Unit for General Practice, Aarhus University, Bartholins Allé 2, DK-8000 Aarhus C, Denmark.
E-mail: afp@ph.au.dk

Date received 16 January 2017; reviewed 28 April 2017; accepted 15 May 2017

© Author(s) 2017
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DOI: 10.1177/1403494817715380
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2    A.F. Pedersen and P. Vedsted
cancer beliefs between high-income countries, with
the Danish respondents having one of the highest
levels of negative beliefs about cancer [11].
Cancer beliefs are important because they often
determine behaviour. For instance, appropriate
health-related behavioural changes after a personal
or vicarious cancer experience are tied to the percep-
tion of control over the cancer disease and the belief
that self-care can affect cancer outcomes [12-14].
Vicarious cancer experience is here defined as
becoming familiar with cancer through a family
member or a friend who is diagnosed with the dis-
ease. Moreover, a high level of negative cancer beliefs
seems to increase risk of a long anticipated patient
interval for persisting cough and rectal bleeding
[15]. To our knowledge, studies have not examined
whether the beliefs of cancer patients and persons
within the patient’s close circle of acquaintances
(e.g. relatives, friends or colleagues) are influenced
differently by the cancer experience. Most of the
studies examining the psychological consequences
of a cancer diagnosis among cancer patients and
their relatives have focused on partners of cancer
patients. It has been reported that partners of cancer
patients seem to be more afflicted mentally and
emotionally by the disease compared with the
patients [16]. Whereas survivors of cancer are some-
times portrayed in a manner idealising the cancer
experience as an event, which changed life for the
better [17], partners of cancer patients seem to focus
on the severe consequences of the disease and
describe their experience as living in the shadow of
the disease [16]. The results of another study
revealed that having someone within a person’s close
circle of acquaintances appeared to increase aware-
ness about cancer, as it increased the rate of screen-
ing for colorectal cancer and prostate cancer [18].
Such a change in health behaviour could be moti-
vated both by negative cancer beliefs (e.g. an unrea-
sonable high cancer fear) and by positive cancer
beliefs (e.g. a belief that timely seeking of healthcare
matters). Since the impact of cancer experience on
cancer beliefs is virtually unexamined, and since the
vast majority of previous studies focusing on cancer
beliefs have examined static factors such as ethnicity
and socioeconomic position, the objective of this
study was to examine the association between cancer
experience and positive and negative cancer beliefs.
Methods
Data were collected from 31 May to 4 July 2011 as
part of the International Cancer Benchmarking
Partnership (ICBP) Module 2 study [19]. Data collec-
tion has been described in detail elsewhere [20]. A total
of 20,000 Danish residents 30–49 years of age and
40,000 residents 50 years of age and older were ran-
domly selected through the Danish Civil Registration
System [21]. After exclusion of persons who had dis-
claimed any contact for research purposes (n = 6570,
11.0%), contact information on the 53,430 persons
left were enriched with landline or mobile phone num-
bers from a national market research and consulting
firm (NN Markedsdata). Target population of 1000
respondents 30–49 years of age and 2000 respondents
aged 50 years and older were set to complete a com-
puter-assisted telephone interview. To obtain inclusion
of the 3000 respondents, 8169 persons were contacted
(response rate = 36.7%) [20]. Trained native-speaking
interviewers from the research company Ipsos MORI
(2013) conducted the interviews, using the Awareness
and Beliefs about Cancer (ABC) measure [5]. This
instrument was translated into Danish using the for-
ward and backward translation procedure [22].
Beliefs about cancer
The ABC contains three positively framed (e.g.
Cancer can often be cured) and three negatively framed
(e.g. A diagnosis of cancer is a death sentence) state-
ments examining respondents’ beliefs about cancer.
Response options were strongly disagree, tend to dis-
agree, tend to agree and strongly agree, which were
dichotomised into disagree/agree. Therefore, agreeing
corresponds to a positive and a negative belief for the
three positive and three negatively framed statements,
respectively. ‘Don’t know’ and ‘don’t want to answer’
were classified as missing. As factor analysis has
revealed that the six beliefs are not unidimensional,
the beliefs were analysed independently [22].
Cancer experience
Cancer experience, either personally or in close oth-
ers, was assessed by asking whether the respondent
himself or any friends or family members that were
close to the respondent had ever been diagnosed with
cancer. Response options were ‘Yes, respondent
(self)’, ‘Yes, someone close’, ‘Yes, both respondent
(self) and someone close’, ‘Yes, but would prefer not
to say who’ and ‘No’. For the present analyses,
respondents who would not inform who had been
diagnosed with the disease were excluded.
Demographic characteristics
Data were collected on sex, age (categorised as: younger
than 50 years, 50–59, 60–69, 70–79 and 80 years or
older), marital status (categorised as cohabiting vs. sin-
gle), highest level of education (categorised as no
 Cancer beliefs   3
Table I.  Sociodemographic characteristics of the included respondents by cancer experience.

All Cancer experience

N (%)
  2992 (100) Someone close Self Both None
N (%) N (%) N (%) N (%)
2195 (73.4) 184 (6.2) 141 (4.7) 472 (15.8)

Sex  
 Females 1655 (55.3) 1260 (57.4) 108 (58.7) 102 (72.3) 185 (39.2)
 Males 1337 (44.7) 935 (42.6) 76 (41.3) 39 (27.7) 287 (60.8)
Age  
  <50 years 994 (33.2) 775 (35.3) 21 (11.4) 21 (14.9) 177 (37.5)
  50–59 years 745 (24.9) 580 (26.4) 35 (19.2) 26 (18.4) 104 (22.0)
  60–69 years 764 (25.5) 526 (24.0) 77 (41.9) 50 (35.5) 111 (23.5)
  70–79 years 392 (13.1) 252 (11.5) 40 (21.7) 39 (27.7) 61 (12.9)
  >80 years 97 (3.2) 62 (2.8) 11 (6.0) 5 (3.6) 19 (4.0)
Marital status  
 Cohabiting 2347 (78.4) 1730 (78.8) 144 (78.3) 144 (78.3) 376 (79.7)
 Single 643 (21.5) 464 (21.1) 39 (21.2) 39 (21.2) 96 (20.3)
Education  
  No university degree 1967 (65.7) 1423 (64.8) 138 (75.0) 90 (63.8) 316 (67.0)
  University degree 1018 (34.0) 766 (34.9) 46 (25) 50 (35.5) 156 (33.1)
Smoking status  
 Non-smoker 2303 (77.0) 1678 (76.5) 144 (78.3) 116 (82.3) 365 (77.3)
 Smoker 688 (23.0) 516 (23.5) 40 (21.7) 25 (17.7) 107 (22.7)

Column percentages. Values may not total 100 due to rounding or missing information.

university degree vs. university degree) and smoking
status (categorised as never/former vs. current).
Statistics
To estimate the association between cancer experi-
ence and cancer beliefs, we used generalised linear
models with binomial log link function to model the
risk ratios (RRs) with 95% confidence intervals (CI).
In the adjusted model, the following a priori poten-
tial confounding variables were included: gender,
age, educational level, marital status and smoking
status. Statistical analyses were performed with
STATA 13.1 and two-tailed p-values ≤0.05 were con-
sidered statistically significant.
Ethics and approval
The Danish Data Protection Agency (J. no. 2011-41-
6237) and the Danish Health and Medicines author-
ity approved the study. According to the Central
Denmark Region Committees on Biomedical
Research Ethics, the study needed no further
approval (Report no. 128/2010).
Results
A total of 2998 respondents completed the item
regarding experience of cancer. We excluded six
respondents who reported that they had cancer
experience but preferred not to say who had been
diagnosed with the disease. Among the 2992 respond-
ents included for analyses, 2195 (73%) reported that
someone close had been diagnosed with cancer, 184
(6%) that they had been diagnosed with cancer
themselves, 141 (5%) that both themselves and
someone close had been diagnosed with cancer and
472 (16%) reported that they had no experience of
cancer. Sociodemographic characteristics of the
2992 included respondents are depicted in Table I.
The endorsement rates of positive cancer beliefs
were high (85–98%). The negative cancer belief with
highest endorsement rate was ‘Cancer treatment is
worse than the cancer itself’ (endorsed by 60–68%),
followed by ‘A diagnosis of cancer is a death sentence’
(23–31%) and ‘Not want to know if I have cancer’ (10–
13%). The endorsement rates and the associations
between cancer experience and the likelihood of declar-
ing agreement with positive and negative cancer beliefs
are depicted in Table II. Those who had been diagnosed
with cancer themselves and also had someone close
diagnosed with cancer were more likely to believe that
cancer can often be cured compared with those who
had someone close diagnosed with cancer (RRadj =
1.05, 95% CI = 1.01–1.09). None of the other positive
cancer beliefs was associated with cancer experience.
Those who had no cancer experience were less
likely to believe that cancer treatment is worse than
the cancer itself (RRadj = 0.91, 95% CI = 0.84–0.98)
and that a diagnosis of cancer is a death sentence
4    A.F. Pedersen and P. Vedsted
Table II.  Frequencies and results of multivariate generalised linear models analysing the likelihood of agreement (agree or strongly agree)
with each cancer belief item (significant values in bold).

Cancer experience

  Someone Self Both None

close(Reference)

  N (%) RR*adj N (%) RR*adj (95% CI) N (%) RR*adj (95% CI) N (%) RR*adj (95% CI)
(95%CI)

People with cancer 1816 (85) 1.00 157 (87) 1.00 (0.94–1.06) 122 (88) 1.02 (0.95–1.08) 397 (87) 1.03 (0.99–1.06)
can expect to
continue with normal
activities
Cancer can often be 1909 (88) 1.00 167 (93) 1.03 (0.99–1.08) 130 (93) 1.05 (1.01–1.09) 414 (90) 1.01 (0.97–1.04)
cured
Going to the doctor 2144 (98) 1.00 178 (97) 0.98 (0.96–1.01) 137 (97) 1.00 (0.98–1.02) 451 (96) 0.99 (0.97–1.00)
as quickly as possible
could increase
the chances of
surviving**
Cancer treatment 1346 (68) 1.00 99 (62) 0.87 (0.77–0.98) 88 (68) 0.95 (0.84–1.06) 251 (60) 0.91 (0.84–0.98)
is worse than the
cancer itself
Not want to know if I 204 (10) 1.00 22 (12) 1.09 (0.73–1.65) 15 (11) 1.00 (0.61–1.63) 60 (13) 1.31 (1.01–1.71)
have cancer
A diagnosis of cancer 664 (31) 1.00 41 (23) 0.78 (0.59–1.03) 32 (23) 0.75 (0.55–1.03) 113 (25) 0.83 (0.70–0.98)
is a death sentence

*Adjusted for age, gender, education, marital status and smoking status.
**Not adjusted for age as the model could not converge with age included due to a very few observations in the cells.

(RRadj = 0.83, 95% CI = 0.70–0.98), but more likely
to report that they did not want to know if they had
cancer (RRadj = 1.31, 95% CI = 1.01–1.71) com-
pared with respondents with someone close diag-
nosed with cancer. Those who had been diagnosed
with cancer themselves were also less likely to
believe that cancer treatment is worse than the can-
cer itself compared with respondents with someone
close diagnosed (RRadj = 0.87, 0.77–0.98). A lower
share of respondents who had been diagnosed with
cancer themselves (23%) believed that cancer is a
death sentence compared with the share among
respondents with someone close diagnosed (31%),
but the difference was not statistically different
(RRadj = 0.78, 95% CI = 0.59–1.03).
Discussion
Main finding
The belief ‘I do not want to know if I have cancer’
was endorsed by fewest (10–13%) and ‘Going to
the doctor as quickly as possible could increase the
chances of surviving’ by most respondents (96–
98%). A discussion of the endorsement rates of
positive and negative cancer believes can be found
in Hvidberg et al. [6]. The belief that cancer treat-
ment is worse than the cancer itself was more fre-
quent among respondents with someone close
diagnosed with cancer than among respondents
who had been diagnosed with cancer themselves.
This might suggest that witnessing someone close
going through harsh cancer treatment is a very
unpleasant experience to many relatives [16].
Another explanation of this finding could be that
respondents with a personal history of cancer must
necessarily be cancer survivors, and therefore the
cancer treatment they have received is experienced
as an effective part of the trajectory. In contrast to
this, some of the respondents with someone close
diagnosed may have lost their closely related to the
disease. If cancer treatment had a positive impact
on the disease, the side effects are possibly more
acceptable than when the treatment turns out to be
ineffective. Compared with respondents with some-
one close diagnosed with cancer, the belief that
cancer treatment is worse than the cancer itself was
also less frequent among respondents with no can-
cer experience. This is possibly because they are
unfamiliar with cancer treatments.
Among respondents with someone close diag-
nosed, the share who believed that cancer is a death
sentence was 31%. This share was significantly
higher than the share of 25% observed among
respondents with no cancer experience. Among
respondents who had been diagnosed with cancer
themselves, and eventually also had vicarious cancer

experience, the share was 23%. Compared with
respondents with someone close diagnosed, the
share of the latter was not significantly different,
which may be a consequence of the relatively few
respondents with personal cancer experience, pos-
sibly causing the study to be underpowered to detect
a difference between those with personal and only
vicarious cancer experience. Despite that respond-
ents who had no cancer experience were least likely
to believe that cancer treatment is worse than the
cancer itself, they were more likely to report that
they did not want to know if they had cancer. The
latter is a worrying result, as it could be hypothe-
sised that this group of respondents would postpone
healthcare seeking insofar they experienced a symp-
tom they interpreted as a possible cancer sign. There
is not much research to support that individuals
who prefer to be ignorant of serious disease actually
postpone healthcare seeking. Meanwhile, results
obtained from the same population revealed that
respondents with a high level of negative cancer
beliefs, including for instance ‘I do not want to
know if I had cancer’, were more likely to report a
long patient interval if they hypothetically experi-
enced persisting cough or rectal bleeding [15].
Having had cancer yourself combined with having
someone close with the disease increased the likeli-
hood of believing that cancer can often be cured, but
apart from this finding, this type of cancer experience
did not reveal any clear association with cancer
beliefs. This may be explained by the fact that the
impact of a personal cancer history and having some-
one close with cancer appeared to pull in opposite
directions, with a tendency towards those who have
been diagnosed with cancer themselves possessing
less negative cancer beliefs compared with those with
someone close diagnosed.
Comparisons with existing literature
Some explanations can be suggested for the tenta-
tive associations between cancer experience and
cancer beliefs. Content analysis of cancer stories in
Canadian magazines revealed that the fear linked
with cancer is often exacerbated in the mass media.
For example, cancer is often portrayed as a disease
which is (almost) inevitable, grows silently and
secretly, and spreads for years before it can be
diagnosed [24]. However, the role of mass media is
questionable as it targets the entire population
[18]. Even though cancer experience possibly
influences the degree of attentiveness to mass
media cancer stories, this variation in attentiveness
seems an unlikely explanation taking the pattern of
findings into consideration.
Cancer beliefs   5
The impact of cancer, either personally experi-
enced or experienced through a closely related person,
on cancer beliefs is to our knowledge unexamined.
Meanwhile, a few studies have examined whether pro-
fessional cancer experience has an influence on the
attitude to cancer, and they are fairly supportive that
professional cancer experience can have an impact on
cancer beliefs. One study of nurses revealed that 77%
of nurses with professional cancer experience believed
cancer was curable compared with 58% of nurses with
little or no professional cancer experience [24].
One study of 106 consecutive British cancer
patients who were about to receive chemotherapy
revealed that patients were most likely to accept
intensive treatments for a potentially small benefit
compared with 100 controls without cancer
matched for age, sex, ethnic origin and occupation
[25]. Likewise, the results of a study of 160
Norwegian cancer patients who had never received
chemotherapy found that cancer patients and sur-
gical nurses were most reluctant with regard to
accepting hypothetical chemotherapy with numer-
ous side effects, whereas oncologists were most
likely to accept treatment [26]. However, results of
another study of oncology health professionals
revealed that they hold negative attitudes to can-
cer, including fear of the cancer situation, hope-
lessness and stigma [27]. Furthermore, the results
of one study revealed that medical oncologists
were more likely to accept radical treatments than
general practitioners (GPs) who, in turn, were
more likely to accept these treatments than cancer
nurses [25]. If level of positive cancer beliefs were
determined in a straightforward manner by cancer
experience, one would expect cancer nurses to
hold more positive beliefs about cancer than GPs.
Strengths and limitations
Among the strengths of this study are the popula-
tion-based approach and the large number of
respondents. The response rate on approximately
37% was acceptable. Furthermore, the responses
from participants were gathered by use of the ABC
measure, which has shown to be a reliable and
valid instrument for determining awareness and
beliefs about cancer among people aged 50 years
and older [5]. Although the ABC interview was
structured and interviewers were carefully trained
in order to collect data on the ABC measure accu-
rately, inter-rated reliability has not been assessed.
Another limitation is the risk of selection bias, as
63% of the persons reached by phone did not com-
plete the interview. Comparing respondents with
the study base, people with higher socioeconomic
6    A.F. Pedersen and P. Vedsted
position were overrepresented in the study [6].
Unfortunately, reliable information regarding eth-
nicity could not be obtained from the question-
naire data. Furthermore, we have no information
concerning vital status of the close other diagnosed
with cancer as we have no information concerning
how much time has passed since the respondents
themselves were diagnosed with cancer and pre-
sent disease status. The respondents with personal
cancer experience must obviously be cancer survi-
vors, whereas some of the respondents with some-
one close diagnosed may have lost their closely
related to the disease. This could potentially have
biased the cancer beliefs held by these groups of
respondents, and may explain in particular why the
group of respondents with someone close diag-
nosed had the highest share of individuals who
believed that cancer is a death sentence. Moreover,
in the group of respondents with vicarious cancer
experience we were not able to distinguish between
first-degree relatives and more distant relatives and
acquaintances outside family. First-degree rela-
tives may carry an elevated risk for cancer if they
share genetic and/or behavioural risk factors with
the cancer patient, and their point of view on can-
cer may be different compared with other respond-
ents with vicarious cancer experience. The potential
heterogeneity of respondents with someone close
diagnosed is a limitation of the study. Finally, the
cancer beliefs retrieved from respondents with
someone close diagnosed may be subject to recall
bias, as they may remember only the close others
with cancer who died from the disease.
Conclusions and suggestions for future
work
We found that the belief about cancer was associ-
ated with peoples’ cancer experience. That cancer
treatment is worse than the cancer itself was less
frequent among respondents who had been diag-
nosed with cancer themselves or had no cancer
experience compared with respondents with some-
one close diagnosed. We found that the belief that
cancer is a death sentence was most frequent
among respondents with someone close diagnosed
than among respondents with no cancer experi-
ence. Since cancer beliefs seem to determine
health-related behaviour [12-14], it is very impor-
tant that negative cancer beliefs are addressed and
perhaps reframed in cases of cognitive distortions.
Most people will be related to a cancer patient, and
it will be very unfortunate if relatives of cancer
patients assume that cancer is a death sentence and
let this belief guide their behaviour and, for exam-
ple, postpone healthcare seeking, as having no
treatment can affect the cancer outcome. This
would create a self-fulfilling prophecy, possibly
affecting the next generation of cancer relatives.
The findings of this study support the notion that
cancer beliefs are dynamic, as cancer beliefs seem
to be modifiable by cancer experience. This is an
important addition to previous findings linking
cancer beliefs to mainly static factors. First, this
might have implications for the reliability of retro-
spective studies examining the association between
cancer beliefs and various types of health behav-
iour before the cancer diagnosis. Future research
should investigate whether individuals with per-
sonal, vicarious or no cancer experience reveal dif-
ferent patterns of healthcare seeking when
experiencing a possible cancer symptom.
Acknowledgements
We thank Anders Helles Carlsen for his thorough
statistical guidance and Line Hvidberg for her hard
work during data collection. The authors thank
Anna Carluccio, Colin Gardiner, Julia Pye, Laura
Thomas and Chris Marshall of Ipsos MORI for
coordinating the fieldwork, and Kate Aldersey,
Martine Bomb, Catherine Foot, Donia Sadik and
Emily Fulleylove of Cancer Research UK for man-
aging the programme (at the time of the study) and
monitoring the media.
ICBP Programme Board (at the time of the study):
Ole Andersen, Søren Brostrøm, Heather Bryant,
David Currow, Anna Gavin, Gunilla Gunnarsson,
Jane Hanson, Todd Harper, Stein Kaasa, Nicola
Quin, Linda Rabeneck, Michael A Richards, Michael
Sherar and Bob Thomas.
Academic Reference Group: Neil Aaronson, David
Cella, Henrik Møller, Keith Petrie and Liesbeth Van
Osch. ICBP Module 2 Working Group: Jane Wardle,
Michael Donnelly, David Donnelly, Deb Keen, Chris
Roberts, James Kite, Blythe O’Hara, Donna Perez,
Lisa Petermann, Christian Wulff, Kate Brain and
Melanie Wakefield.
The Research Centre for Cancer Diagnosis in
Primary Care (CaP) is supported financially by the
Danish Cancer Society and Novo Nordic Foundation.
The funders were not involved in study design, col-
lection, analysis and interpretation of the data, writ-
ing of the article or the decision to submit it for
publication.
Conflict of interest
The authors declare that there is no conflict of interest.

Funding
This research received no specific grant from any
funding agency in the public, commercial, or not-for-
profit sectors.
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