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JonesO, etal. Int J Gynecol Cancer 2024;34:73–79. doi:10.1136/ijgc-2023-004796
The Womb Cancer Awareness Measure (WCAM):
development of an instrument to assess public
awareness of endometrialcancer
Olivia Jones,
1
Hannah Young,
1
Helen Clarke,
1
Emma J Crosbie,
1,2
Vanitha N Sivalingam
1,3
► Additional supplemental
material is published online
only. To view, please visit the
journal online (http:// dx. doi. org/
10. 1136/ ijgc- 2023- 004796).
1
Division of Cancer Sciences,
The University of Manchester,
Manchester, UK
2
Department of Colposcopy and
Gynaecological Oncology, St
Mary's Hospital, Manchester
University NHS Foundation
Trust, Manchester, UK
3
Gynaecology, Liverpool
Women's Hospital NHS
Foundation Trust, Liverpool, UK
Correspondence to
Prof Emma J Crosbie, Division
of Cancer Sciences, The
University of Manchester,
Manchester, M13 9WL, UK;
emma. crosbie@ manchester.
ac. uk
Received 6 July 2023
Accepted 6 November 2023
Published Online First
6December2023
To cite: JonesO, YoungH,
ClarkeH, etal. Int J Gynecol
Cancer 2024;34:73–79.
Original research
© IGCS and ESGO 2024.
Re- use permitted under CC BY.
Published by BMJ.
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INTERNATIONAL JOURNAL OF
GYNECOLOGICAL CANCER
ABSTRACT
Objective To develop and test a novel instrument to
assess public awareness of endometrial cancer symptoms
and risk factors in a UK population.
Methods A 36- item questionnaire was developed
through literature review and extraction from cancer
awareness materials. The Womb Cancer Awareness
Measure (WCAM) was tested for content validity in 65 self-
identied female research participants and 10 endometrial
cancer experts prior to UK- wide eld testing using
social media. Test- retest reliability was assessed over
2 weeks, construct validity was assessed by comparing
womb cancer experts and non- medical academics, and
sensitivity to change was assessed by comparing scores
of participants who read an endometrial cancer leaet with
those given a control leaet.
Results Fifty- two percent of the items in the test- retest
reliability showed >80% agreement. Construct validity was
demonstrated; endometrial cancer experts achieved higher
scores (median 79 (IQR 18)) than non- medical academics
(median 50 (IQR 18)) (p<0.001). The WCAM was sensitive
to change; volunteers who read an endometrial cancer
leaet showed greater awareness (median 73 (IQR 9))
than those who read the control leaet (median 59 (IQR
9)) (p<0.001). Knowledge of endometrial cancer red ag
symptoms and risk factors was poor in the 847 UK- based
participants.
Conclusions Our ndings support the validity and
reliability of the Womb Cancer Awareness Measure in
assessing public awareness of endometrial cancer. In a
UK population sample, knowledge of warning symptoms
and risk factors was low, highlighting the need for public
awareness campaigns.
INTRODUCTION
Endometrial cancer is the sixth most common cancer
occurring in women worldwide, with more than
417 000 new cases being diagnosed in 2020.
1
The
incidence rates are highest in North America and
Europe, with increasing incidence being reported in
countries with rapid socioeconomic transition.
2
In the
UK, endometrial cancer is the most common gyneco-
logical cancer with a 55% increase in the incidence
rate since the 1990s.
3
The increased incidence of
endometrial cancer is attributed to the prevalence
of risk factors,
2
especially obesity.
4
One- third of
endometrial cancer cases could be preventable,
2 5
supporting the need for targeted prevention strategies,
while non- modiable risk factors could be addressed
by increased public awareness, risk perception, and
encouragement of positive health behaviours.
6
Early- stage diagnosis of cancer increases survival,
reduces treatment morbidity, and improves quality
of life. Lung and bowel cancer symptom awareness
campaigns have improved the likelihood of early
presentation, with an increase in healthcare atten-
dance with publicized symptoms.
7
In the absence
of endometrial cancer screening programs, warning
symptom knowledge could trigger rapid presenta-
tion and diagnosis.
6 8
Some women attribute warning
symptoms including abnormal vaginal bleeding and
discharge
9
to benign causes and avoid seeking help
due to competing family and work demands, difculty
accessing healthcare, and fear of wasting doctors’
time.
10 11
In a German study, poor awareness of endo-
metrial cancer risk factors was identied, demon-
strating a need for risk awareness- raising initiatives.
12
The UK Government’s Cancer Reform Strategy
identied the need for standardized measurements
of cancer awareness to promote earlier diagnosis
and improve survival rates,
13
resulting in the devel-
opment of the Cancer Research UK (CRUK)’s Cancer
Awareness Measure.
14
Identifying effective ways of
raising public awareness about endometrial cancer is
WHAT IS ALREADY KNOWN ON THIS TOPIC
⇒ Increased awareness of risk factors and warning
symptoms of endometrial cancer could encourage
personal risk perception, modify health behaviors
and prompt early presentation.
WHAT THIS STUDY ADDS
⇒ In a well- educated UK female population, only 13%
and 25%, respectively, were able to identify >2 risk
factors or warning symptoms for endometrial can-
cer, with almost half lacking condence in the de-
tection of red ag symptoms.
HOW THIS STUDY MIGHT AFFECT RESEARCH,
PRACTICE OR POLICY
⇒ The Womb Cancer Awareness Measure can be used
to measure effectiveness of endometrial cancer
public awareness initiatives, one of the most import-
ant research priorities in endometrial cancer.
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Original research
a top 10 research question for patients and clinicians.
15
The Womb
Cancer Awareness Measure (WCAM) was developed and tested as
a self- complete instrument to assess public awareness of endo-
metrial cancer, consisting of items related to knowledge of red ag
symptoms and risk factors (see online supplemental appendix S1).
The assessments of the psychometric properties of the instrument
and the rst survey of endometrial cancer awareness in the UK are
reported.
METHODS
The study was designed in two phases: (1) development and
content validity of the WCAM in research participants and womb
cancer experts to ascertain validity, reliability, and responsiveness;
and (2) testing of the WCAM in a cohort of UK participants.
Questionnaire Development, Validation, and Scoring
Based on a priority setting partnership with patients and healthcare
professionals, ‘womb cancer’ is the preferred lay phrase to describe
endometrial cancer.
15
Eligible items were identied from the liter-
ature and public- facing cancer information websites including
cancerresearchuk.org and macmillan.org.uk.
Items assessed the ability to detect warning symptoms and
personal risk to reduce patient- attributable delays (see online
supplemental table S1). An unprompted question was followed by
a prompted checklist of endometrial cancer symptoms and risk
factors in addition to distractor items.
14
Questions were designed to
evaluate condence levels in detecting a red ag symptom and the
rapidity of seeking medical care, modeled on existing instruments
for breast,
16
ovarian, and cervical cancer.
17
The rst version was circulated to a panel of scientists, gyne-
cological oncologists, and patient representatives; irrelevant and
ambiguous items were removed. Participants were invited to
comment on the content and design of the instrument (see online
supplemental appendix S1). Two independent observers scored
each completed WCAM according to a proforma (see online supple-
mental appendix S2). Higher scores indicated greater endometrial
cancer awareness.
Content Validity Studies
Research participants in the test- retest reliability and sensitivity to
change analyses (n=65) comprised university staff and students
who self- identied as biologically female (online supplemental
table S2) and who responded to university- based physical and
electronic advertisements. Womb cancer experts (n=10) and non-
clinical scientists (n=16) in the construct validity analysis comprised
both male and female participants recruited through electronic
advertisements, university distribution lists, and the researchers’
networks. Statistical analyses were performed using SPSS v25.0. A
p value of <0.05 was regarded as statistically signicant.
Readability
Readability was calculated using the Flesch Reading Ease formula
(Microsoft Word v.2015). Scores ranged from 0 to 100, with higher
scores indicating a text that is easy to read. A score of >60 is
considered acceptable readability for the average adult.
18
Test-Retest Reliability
To establish consistency, participants completed it twice within 14
days as baseline knowledge is likely to remain constant and orig-
inal answers are not recalled during this timeframe.
14
Test- retest
reliability was assessed for each item using Cohen’s kappa coef-
cient.
16
Large positive kappa values (range −1 to +1) represent
high levels of agreement. The percentage of exact agreements for
each item was calculated as the kappa statistic can be distorted or
indeterminate if variables are nearly or completely constant.
19
Construct Validity
The ‘known- groups’ method was used to assess whether items
could measure the construct of endometrial cancer awareness.
20
Differences in correct WCAM responses from gynecological oncolo-
gists (n=10) and non- medical academics (n=16) were tested using
Mann–Whitney U and χ
2
tests. Validity is established when signi-
cant differences in knowledge scores between two groups known
to differ in cancer awareness levels are detected.
Sensitivity to Change
Participants were randomized to read one of two leaets before
completing the WCAM. The intervention group (n=22) read an
endometrial cancer leaet while the control group (n=21) received
a leaet of similar length and readability about climate change.
Testing the WCAM in the UK Population
The validated WCAM was tested in a UK population sample between
May and July 2021 to measure public awareness of endometrial
cancer and barriers to diagnosis. Advertisements on social media
platforms invited participants aged ≥18 years who self- identied as
biologically female to participate. To diversify sampling, the survey
was shared on the researchers’ community groups and retweeting
was encouraged to enable a snowball effect.
21
Dissemination
through social media pages of patient support groups (endometrial
cancer, polycystic ovary syndrome) gained responses from partici-
pants previously at risk or at increased risk of endometrial cancer.
We compared the prompted and unprompted knowledge
scores of red ag symptoms to assess the educational effect of
the checklist. Knowledge scores in participants with experience of
endometrial cancer were compared with those with no previous
experience. Prior endometrial cancer experience was determined
by self- declaration of occupation (healthcare professional) and the
question “Have you, a relative, or close friend ever been diagnosed
with womb cancer?”
RESULTS
The Flesch Reading score of 71 demonstrated a reading standard
that is acceptable and easier to understand than average adult
reading material.
Test-Retest Reliability
The characteristics of the participants in the validation studies
are shown in online supplemental table S2. The median age was
41 (range 24–65) and 5% were of non- white ethnicity. A total of
22 of 23 (96%) participants completed the WCAM at both time
points (Table 1). Thirty- two percent of the kappa statistics were
in the range of moderate to substantial agreement (0.41–0.70).
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Original research
Thirty six percent were negative or indeterminate due to partic-
ipants responding with the same answer in both attempts (‘yes’
for postmenopausal bleeding) as items achieved high agreement
(86–100%). Over half the items exceeded 80% agreement with risk
factor and relative risk items scoring lower. Seventy- three percent
had an improved total knowledge score during a second attempt
(mean improvement 5.5±9.3%).
Construct Validity
The WCAM discriminated between the knowledge scores of cancer
experts (median score 78.5 (IQR 18)) and non- experts (median score
50 (IQR 18)) (p<0.001) (Table2). Experts listed more unprompted
red ag symptoms (median difference 2) and risk factors (median
difference 2) (p<0.001) and correctly selected more warning symp-
toms (median difference 1.5) and risk factors (median difference
3.5) (p=0.041) when prompted.
Sensitivity to Change
The intervention and control groups in the sensitivity to change
analysis were comparable in age, ethnicity, and educational attain-
ments (see online supplemental table S2). Participants who received
the cancer information leaet (intervention) had signicantly
greater knowledge scores than the controls for all items except in
knowledge of warning symptoms (Table3). Both groups had low
unprompted scores for warning symptoms and risk factors. The
intervention group’s median scores (74%) were similar to scores
achieved by cancer experts (79%), demonstrating the educational
effect of patient information leaets.
Testing Endometrial Cancer Awareness in the UK Population
A total of 847 participants were recruited and, of these, 763 partic-
ipants (90%) answered all items. The median age was 44 years
(range 19–80) and the majority (94%) were White. Seventy percent
of participants were educated to degree level or higher. A third of
Table 1 Test- retest reliability of the Womb Cancer Awareness Measure
% of exact agreements Kappa statistic*
Identifying correct warning signs
Bleeding between periods 100 –
Having heavier periods 73 −0.08
Postmenopausal bleeding 100 –
Bloody discharge 91 0.45
Pelvic pain 95 –
Anemia 82 0.65
Weight loss 68 0.24
Identifying distractor signs
Pain during sex 91 0.46
Identifying correct risk factors
Not having children 64 0.27
Starting periods at a young age 77 0.5
Being postmenopausal 64 0.24
Having had a late menopause 73 0.46
Having a close relative with womb cancer 86 –
Having polycystic ovary syndrome 68 0.37
Having diabetes 82 0.65
Being overweight 82 0.65
Having a sedentary lifestyle 86 0.58
Using tamoxifen 55 0.10
Identifying correct distractor factors
Having a hysterectomy 86 –
Taking the combined contraceptive pill 82 −0.10
Having a negative cervical smear 59 0.36
Knowledge of peak age of incidence
A 30-, 50-, 70-, or 80- year- old woman 50 0.27
Knowledge of endometrial cancer screening 77 0.54
*The kappa statistic represents the level of agreement and ranges between −1 and +1. Large positive values suggest a higher level of
agreement. The percentage agreement shows the percentage of participants who answered each item the same way in repeated attempts.
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Original research
participants had either received a previous endometrial cancer
diagnosis themselves or in someone close to them. An additional
11% had a medical condition that predisposed them to endometrial
cancer including polycystic ovary syndrome (6%) and endometrial
hyperplasia (3%) (see online supplemental table S3).
Only one- quarter of participants could identify more than two
unprompted warning symptoms for endometrial cancer. The word
cloud (Figure 1A) depicts the most frequent correct responses;
abnormal bleeding was the most recognized symptom. Abnormal
discharge, fatigue, and weight loss were reported in 10% of
responses. A third of women inaccurately reported bloating as a
warning symptom of endometrial cancer. Other common miscon-
ceptions included change in bowel habit and dyspareunia (online
supplemental gure S1). Only 13% of participants could identify
more than two risk factors; the most identied were obesity (43%)
and genetics (27%) (Figure1B).
When prompted, most participants recognized intermenstrual
bleeding (90%), pelvic pain (86%), and postmenopausal bleeding (85%)
as red ag symptoms (see online supplemental table S4). A genetic
predisposition to endometrial cancer (89%) was considered the most
Table 2 Construct validity of the Womb Cancer Awareness Measure
Awareness section
Endometrial cancer
experts
(n=10)
Non- medical
academics
(n=16)
Median
difference P value*Median (IQR) Median (IQR)
Total knowledge score*
(max: 98)
78.5 (18) 50 (18) 28.5 <0.001
Unprompted warning signs and symptoms
(max: 8)
4 (1) 2 (0) 2 <0.001
Prompted warning signs and symptoms
(max: 7)
7 (2) 5.5 (1) 1.5 0.041
Unprompted risk factors
(max: 10)
5.5 (3) 2 (2) 2 <0.001
Prompted risk factors
(max: 70)
57.5 (6) 47.5 (4) 3.5 <0.001
Peak age of incidence
(max: 2)
2 (0) 1 (2) 1 0.001
n (%) n (%) χ2 P value*
Awareness of screening program (correct) 10 (100) 9 (56) 3.97 0.02
*Assessed with χ
2
tests.
Table 3 Sensitivity to change: differences in the Womb Cancer Awareness Measure scores between control and intervention
patients
Awareness section
Control
(n=22)
Intervention
(n=21)
Median
difference P value*Median (IQR) Median (IQR)
Unprompted warning signs and symptoms
(max: 8)
2 (2) 2 (1) 0 0.5
Prompted warning signs and symptoms
(max: 8)
6 (2) 7 (1) 1 0.155
Unprompted risk factors
(max: 10)
1 (1) 4 (3) 3 <0.001
Prompted risk factors
(max: 65)
49 (5) 57 (7) 8 <0.001
Age of incidence
(max: 2)
1 (2) 2 (1) 1 0.002
Total knowledge score
(max: 98)
59 (9) 72.5 (9) 13.5 <0.001
n (%) n (%) χ2 P value*
Screening program (correct) 8 (36) 20 (91) 13.9 <0.001
*Assessed with χ
2
tests.
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Original research
signicant risk factor, followed by obesity (82%) and a sedentary lifestyle
(70%) (Figure1B). Smoking and the combined contraceptive pill were
incorrectly considered risk factors by a majority of participants (95% and
85%, respectively) (see online supplemental gure S2). Over 70% recog-
nized that a hysterectomy protects against endometrial cancer. Most
participants (85%) did not recognize that older women (ie, ≥70 years)
are at greatest risk of endometrial cancer and over 50% of participants
incorrectly thought that an endometrial cancer screening program exists
in the UK. Almost half of the participants were ‘not at all condent’ that
they would be able to detect a red ag symptom, although 55% said
they would seek help immediately if a symptom was observed. Of the
28% who said they would wait longer than a month before seeking help,
many cited worries about being perceived as complainers and dismissed
by doctors. Concerns about difculties accessing GP appointments due
to COVID- 19 restrictions were frequently reported.
Participants without prior experience of endometrial cancer had
the lowest mean total knowledge (58%), while the physicians had the
highest (69%) (online supplemental table S5).
DISCUSSION
Summary of Main Results
The WCAM achieved high completion rates (90%) in a population
of people at risk of endometrial cancer and may prove a useful
tool to measure the effect of public awareness initiatives. Improved
scores in repeat completion of the WCAM in test- retest reliability
demonstrate the ‘mere measurement’ effect, where completion of
a questionnaire can improve awareness.
22
Construct validity was
established as experts achieved consistently higher knowledge
scores than non- medical academics.
The WCAM was tested on the UK population by targeting people
who identied as biologically female and thus at risk of developing
endometrial cancer. Our sample was enriched with participants
with previous endometrial cancer experience (1/3) who achieved
greater total knowledge scores compared with the general public.
As only 3% of the UK population will be diagnosed with endometrial
cancer, public awareness is likely even lower than presented.
Results in the Context of the Current literature
Awareness of red ag symptoms was low among the participants;
in the absence of prompts, only 24% could identify more than two
symptoms. While abnormal bleeding was recognized by 35% as
a warning symptom, few were able to characterize the bleeding
(eg, post- menopausal), which may impair communication during
telephone consultations. Almost one- third of patients would delay
seeking help for symptoms; women with gynecological cancer
sometimes normalize their symptoms and will only seek help if they
perceive them as serious.
11
There was a poor awareness of risk factors, with the risks
posed by reproductive factors (nulliparity, early menarche, late
Figure 1 (A)Word cloud representing most frequent correct responses to the unprompted womb cancer warning sign items.
(B)Word cloud representing the most frequent correct responses to the unprompted cancer risk factor items. The larger the
size of the word, the more frequently it was identied by participants.
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menopause) not being recognized. Genetic predisposition was
considered the most signicant risk factor, in keeping with earlier
ndings in German women.
12
In our study, obesity was a recog-
nized risk factor which may be attributed to the 2018–19 CRUK
campaign targeting the modiable role of obesity in cancer.
23
Protective factors associated with endometrial cancer, such as
smoking and the combined contraceptive pill, were largely unrec-
ognized; in fact, almost all participants thought these were risk
factors.
24 25
Smoking cessation public health campaigns are the
likely cause for participants thinking smoking causes all cancers.
Participants could be confused with increased risk of breast cancer
with the hormonal contraception, or may be fearful of long- term
hormonal treatments.
26
Multiple sexual partners and sexually trans-
mitted infections (human papillomavirus) were mistakenly thought
to increase the risk of endometrial cancer. A prior study found that
one in ve women associated gynecological cancer with sexual
promiscuity, which prevented them from seeking help.
27
Confusion
about the risk factors and symptoms of different gynecological
cancers suggests a role for a pan- gynecological cancer awareness
campaign to help the public recognize different symptoms associ-
ated with gynecological cancers.
Strengths and Weaknesses
In addition to the robust validation studies and stakeholder input,
a strength of this study is the assessment of endometrial cancer
awareness in a large UK population sample. A social media approach
was necessary due to COVID- 19 restrictions; however, this approach
had limitations. There was a lack of diversity within the population
(6% were non- white); white ethnicity predicts greater awareness of
general cancer symptoms.
28
Non- white women are more likely to
experience diagnostic delay and have worse outcomes when diag-
nosed with breast cancer.
29
In the USA, incidence rates of endo-
metrial cancer have risen most in non- Hispanic Black and Asian
women. Furthermore, the 5- year relative survival is signicantly
worse in non- Hispanic Black women compared with White or Asian
women.
30
The high education level among participants further
limits generalizability, as currently only one- third of the UK popula-
tion aged 16 and above are educated to degree level.
31
Endometrial
cancer mortality rates are highest among women of low socioec-
onomic status,
32
so further data on endometrial cancer awareness
according to sociodemographic index are needed to evaluate the
need for specic targeting of at- risk populations.
As the WCAM was publicized through social media, the partic-
ipants are digitally- aware people. It is likely that a proportion of
people aged ≥70 years, at greatest risk of endometrial cancer,
were excluded from participating. Only 21% of people aged >75
years have a social media prole compared with 93% of people
aged 25–34 years.
33
Our survey specically targeted those who
self- identify as biologically female (ie, born with a womb), so we do
not know if gaps in knowledge are even greater in people who are
biologically male. The main aim, however, was to assess the aware-
ness in those at greatest risk of developing endometrial cancer (ie,
biologically female with an intact uterus) as a means of encour-
aging early presentation.
Implications for Future Practice
The rst evaluation of endometrial cancer awareness in the UK
shows low condence in symptom detection and inaccurate
knowledge about risk factors, demonstrating a need for high
quality public awareness campaigns.
34
Similar to successful
breast, bowel, lung, and ovarian cancer awareness campaigns,
an endometrial cancer awareness program should aim to raise
awareness of signs and symptoms and increase early presentation
to aid early diagnosis. Future work with the WCAM should include
paper- based implementation and targeted testing in older patients,
non- white ethnic groups (with translated versions), lower socioec-
onomic populations, and those with lower educational attainment
to sample all people irrespective of their level of engagement with
technology. Future assessment of the WCAM will require data on
gender, sexual identity, and disability to provide additional validity
and generalizability. These further studies are key research prior-
ities in detecting cancer early and may address any cultural, reli-
gious, or gender- driven issues which may prevent recognition and
reporting of symptoms of endometrial cancer.
35
CONCLUSION
The WCAM is shown to be a discriminate and reliable tool to assess
public awareness of endometrial cancer. Knowledge of signs and
symptoms of endometrial cancer was decient in a UK sample,
illustrating the need for appropriately designed and targeted public
awareness campaigns.
Twitter Emma J Crosbie @ProfEmmaCrosbie and Vanitha N Sivalingam
@drvsivalingam
Acknowledgements We thank the lay and expert participants who assisted with
this study.
Contributors VNS planned and conceptualized the study. VNS, HY, HC and EJC
designed the awareness measure. OJ and HY conducted the validation studies.
VNS, OJ and EJC analyzed the results and drafted the manuscript. All authors
approved the nal version of the manuscript. VNS is the study guarantor.
Funding Funding was provided through internal funds from the Division of Cancer
Sciences, University of Manchester. VNS is a National institute for Health Research
(NIHR) Academic Clinical Lecturer, HC is a Cancer Research UK (CRUK) Clinical
Research Fellow (C1994/A28797, C147/A25254) and EJC is an NIHR Advanced
Fellow (NIHR300650). Their work is supported by the NIHR Manchester BRC
(NIHR203308).
Competing interests None declared.
Patient consent for publication Not applicable.
Ethics approval This study involves human participants and was approved by
the University of Manchester University Research Ethics Committee (UREC 2019-
8511- 12766). Participants gave informed consent to participate in the study before
taking part.
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement Data are available upon reasonable request. In
accordance with the journal’s guidelines, we will provide our data for independent
analysis by a selected team by the Editorial Team for the purposes of additional
data analysis or for the reproducibility of this study in other centres if requested.
Supplemental material This content has been supplied by the author(s). It has
not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been
peer- reviewed. Any opinions or recommendations discussed are solely those
of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and
responsibility arising from any reliance placed on the content. Where the content
includes any translated material, BMJ does not warrant the accuracy and reliability
of the translations (including but not limited to local regulations, clinical guidelines,
terminology, drug names and drug dosages), and is not responsible for any error
and/or omissions arising from translation and adaptation or otherwise.
Open access This is an open access article distributed in accordance with the
Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits
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ORCID iD
Vanitha NSivalingam http://orcid.org/0000-0001-7567-565X
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