The Cancer Awareness Measures (CAM)
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What is the Cancer Awareness Measure (CAM)?
The Cancer Awareness Measure (CAM) is a validated, face-to-face questionnaire designed to measure the public’s awareness of the symptoms and risk factors of cancer as well as the barriers to seeking help. The CAM can be used at national and local levels to monitor awareness over time, compare awareness and attitudes between groups, identify information needs, and monitor the impact of awareness-raising interventions.
CAM data was first collected in 2008 and continued every two years up until 2014. In 2014 the CAM was modified to include additional questions and items and we conducted a trends analysis, comparing data from 2008-2014. We also published a paper on the anticipated barriers to help-seeking. In 2017, we collected data online and face-to-face and compared results to understand differences by data collection method. Based on these results, we moved the CAM survey online in 2019.
In 2020 we updated the CAM survey in response to the COVID-19 pandemic and collected data approximately every 6 months until February 2022. We have published multiple policy reports and journal papers, including some in collaboration with Cardiff University as part of the CABS project.
Only the 2008 version of the CAM has been validated.
The most recent CAM that we have results for is the September 2022 CAM. The next CAM data will be collected in February 2023 and results will be available later in the year.
*Note that some figures in the slides have been updated since they were presented at the spotlight session.
As a direct result of the pandemic we’ve further modified the CAM and are collecting data on the following areas:
- Health behaviours and health behaviour change attempts
- Actual and hypothetical symptom experience and presentation
- Barriers and enablers to help-seeking
- Type of most recent consultation (GP)
- Cancer awareness - risk factors and signs/symptoms
- Cervical & bowel screening attendance - past and future intentions
- Barriers to attending cervical and bowel screening
- Confidence that it is safe to attend GP/hospital
- Attitudes towards screening and early diagnosis
- Cancer information seeking
This research forms part of the COVID Health and help-seeking behaviour study taking place at Cardiff University (PI: Professor Kate Brain).
We will be collecting survey data from a UK-representative sample of adults at two-points, 6 months apart. The first survey (wave 1) collected data in August/September 2020. Wave 2 will follow-up the same participants and collect data over February/March 2021. Qualitative interviews are being conducted with survey participants at both time-points.
The second policy briefing reporting on participants’ intentions to engage with cervical and colorectal cancer screening during the first 6 months of the pandemic is now available here. A summary of the results is provided below and you can find out more about the research.
Survey results
The study surveyed 7,543 adults across the UK between August and September 2020. This analysis included 2,319 respondents eligible for cervical screening and 2,502 eligible for bowel screening, of whom 1,003 were eligible for both.
- 74% of respondents eligible for cervical screening said they would ‘definitely’ attend their next cervical appointment, while 84% of eligible respondents said they would ‘definitely’ take part in bowel screening.
- Lower intention to attend cervical screening when next invited was associated with being single, not having taken part in screening at last invite, reporting more barriers and being less likely to attend a screening appointment now than before the pandemic. Lower intention to complete home-based bowel screening was associated with not having completed screening at last invite.
- A substantial minority (30% of those eligible for cervical screening, and 19% of those eligible for bowel screening) said they are less likely to take part in screening now than before the pandemic.
- Of those who had not attended their last cervical screen, 70% said this was unrelated to COVID-19. 12% reported being unable to attend due to COVID-19, despite trying, and 15% had chosen not to attend due to COVID-19.
- 75% of responders also said they were worried about delays caused by the pandemic to cancer tests, investigations and screening.
- Top barriers to attending cervical screening were being worried about pain (12%), having a previous bad experience (9%) and embarrassment (9%). Top barriers to bowel screening were the test kit being too messy (5%), not having any symptoms (4%) and embarrassment (4%).
Qualitative interview results
- Thirty survey participants were interviewed. Responders who were interviewed were supportive of the screening programmes but some were unaware that the screening programmes had been paused. They highlighted the value in open and honest communication about the decision to pause cancer screening and felt this had not happened.
- When discussing concerns about engaging with screening during the pandemic, interviewees described fear of attending healthcare settings (cervical screening only) due to increased risk of COVID-19 infection and uncertainty about how to adhere to social distancing rules. No COVID-19 specific barriers were expressed for bowel screening.
- Interviewees who had experienced a delay to cervical or bowel screening were unsure when it would resume and whether they were required to proactively rearrange appointments.
Recommendations
Government and health services need to consider carefully how to best to return screening participation to pre-pandemic levels as quickly as possible and to assess whether the intentions are reflected in actual screening uptake as collected by the different screening programmes. This may involve:
- Nationally coordinated campaigns with clear messaging to inform members of the public that they will be proactively contacted regarding their screening and to encourage them to take part. Campaigns could also encourage the public to proactively engage with cancer screening.
- Continued interventions to reduce non-COVID screening barriers among non-responders, as well as clear public health messaging to reassure the public that screening services are open safely and explain what will happen at the appointment to minimise COVID-19 infection (prioritising groups at risk of nonattendance) to promote engagement among women eligible for cervical screening. Timely implementation of HPV self-sampling once the key validation, quality and implementation questions have been answered, may be key to offering more choice in cervical screening.
- Ensuring sufficient diagnostic workforce capacity to urgently deal with the screening backlog and ensure people who need further diagnostics receive them in a timely manner.
The results on symptom experience and help-seeking behaviours across the UK can be found in a policy briefing and a journal paper. A summary of the results is provided below and you can find out more about the research.
View the results on symptom experience and help-seeking behaviours in Northern Ireland, Wales, England and Scotland.
Survey results
- A population-based sample of N=7,543 UK adults aged 18+ was recruited online between August and September 2020 (Wave 1). Two online surveys were conducted in parallel, the COVID-19 Health and Help-Seeking Behaviour Study (CABS) and the Cancer Research UK (CRUK) COVID-19 Cancer Awareness Measure (COVID-CAM).
- During the six months from the onset of the pandemic in March 2020, 40.1% of survey participants (n=3,025) had experienced at least one potential cancer symptom.
- Among participants who experienced at least one potential cancer symptom, 44.8% (1,355/3,025) had not contacted the GP for any of their symptoms.
- The most frequently endorsed barriers to medical help-seeking in the overall sample were worry about wasting the healthcare professional’s time (15.4%), worry about putting extra strain on the NHS (12.6%), not wanting to be seen as someone who makes a fuss (12.0%), difficulty in getting an appointment with a particular healthcare professional (10.3%) and worry about catching coronavirus (9.6%).
- Remote consulting was not a common barrier to medical help-seeking (4·8%)
- Of the overall sample (N=7,543), around two thirds reported feeling safe from COVID-19 if they needed to attend an appointment at their GP practice (5,142/7,543, 68.2%) or hospital (4,613/7,543, 61.2%). Nearly three quarters (5,452/7,543, 72.3%) were worried about delayed cancer tests and investigations due to COVID-19.
Qualitative interview results
- Thirty survey participants were interviewed. Interviewees indicated that where participants identified a new or changing symptom, this was often attributed to their pre-existing health condition.
- Participants were fearful of seeking medical help in hospitals, in part due to media reporting of COVID-19 in hospitals.
- When participants had contacted their GP, they reported positive experiences that contrasted with their expectations.
- Participants wanted to retain remote consulting as an option after the pandemic, with face-to-face appointments available based on clinical need.
Recommendations - In addition to recent help-seeking campaigns that have happened in some areas of the UK, well-timed and evidence-led nationally funded and coordinated cancer awareness campaigns are needed to signal that cancer cannot wait and that NHS services are open safely for people with any unusual or persistent symptoms.
Recommendations
- In addition to recent help-seeking campaigns that have happened in some areas of the UK, well-timed and evidence-led nationally funded and coordinated cancer awareness campaigns are needed to signal that cancer cannot wait and that NHS services are open safely for people with any unusual or persistent symptoms.
You do not need to request permission to download the Cancer Awareness Measure or other cancer specific versions of the measure. However, some of the CAM surveys are now quite old and have not been updated in line with any recent developments in the evidence, so please consider whether the survey you are considering using is appropriate to use.
We have collected data using the CAM approximately every two years since 2008 and have made several modifications to the questionnaire during that period. You are welcome to use any of the CAM surveys, however the only one that has been formally validated is the original CAM questionnaire.
In 2019, we developed the CAM ‘Plus’ which included a range of new questions on cancer prevention, early diagnosis and screening.
In 2020 and 2021 we developed the COVID-CAM questionnaire in collaboration with academic researchers based at Cardiff University, Kings College London and the University of Survey to understand the impact of the Covid-19 pandemic visit CABS for more information.
- COVID-CAM wave 1 (data collected August-September 2020)
- COVID-CAM wave 2 (data collected February-March 2021)
Further modifications to the survey have been made and the latest survey can be found here:
Data was first collected in Great Britain in 2008. Further waves of data collection were carried out in Great Britain in 2010, 2012, 2014, 2017 and 2019, and in the UK in 2020, 2021 and 2022. Data for 2008, 2010, 2012, 2014 2017 and 2019 are available to download for research purposes from the UK Data Archive.
Data from 2020 and 2021 will be made available by the end of Summer 2022.
The CAM was first developed by Cancer Research UK, University College London, King’s College London and University of Oxford in 2007-8.
The site-specific measures for Breast, Colorectal/Bowel, Cervical, Lung and Ovarian cancer were developed with the support of Breakthrough Breast Cancer, Breast Cancer Care, Ovarian Cancer Action, The Eve Appeal, Ovacome, Target Ovarian Cancer and the Department of Health.
Studies support the validity of the CAMs as measures of cancer awareness in the general population:
Can I use the Cancer Awareness Measure or any of the cancer specific CAMs?
Yes, you do not require permission to use any of the CAM questionnaires
Can I translate the Cancer Awareness Measure or any of the cancer specific CAMs?
These measures have been written and validated in English and we are not aware of any validated translated measures. We encourage translation of the measures using appropriate methods (such as forward and back translation) and strongly advise that any translated versions are subsequently validated to ensure that the measure is reliable and valid. Translated versions should not use the Cancer Research UK logo and should carry the notice (where relevant):
CAM
This survey instrument (CAM) was developed by Cancer Research UK, University College London, Kings College London, and University of Oxford in 2007-2008. This translated version was developed by [insert institution name here].
Cervical CAM
This survey instrument (the Cervical CAM) was developed by the UCL Health Behaviour Research Centre, in collaboration with the Department of Health Cancer Team and The Eve Appeal, with funding from The Eve Appeal. It forms part of the Cervical Cancer Awareness and Symptoms Initiative (CCASI). It is based on a generic CAM developed by Cancer Research UK, University College London, King’s College London and Oxford University in 2007-08. This translated version was developed by [insert institution name here].
Breast CAM
This survey instrument (the Breast CAM) was developed by Cancer Research UK, King’s College London and University College London in 2009 and validated with the support of Breast Cancer Care and Breakthrough Breast Cancer. It is based on a generic CAM developed by Cancer Research UK, University College London, King’s College London and Oxford University in 2007-08. This translated version was developed by [insert institution name here].
Bowel CAM
This survey instrument (Bowel CAM) was developed by University College London and Cancer Research UK. It is based on a generic CAM developed by Cancer Research UK, University College London, Kings College London and Oxford University in 2007-08. This translated CAM FAQs 2020 version was developed by [insert institution name here].
Lung CAM
This survey instrument (Lung CAM) was developed by University College London and Cancer Research UK. It is based on a generic CAM developed by Cancer Research UK, University College London, Kings College London and Oxford University in 2007-08. This translated
version was developed by [insert institution name here].
Ovarian CAM
This survey instrument (Ovarian CAM) was developed by Ovarian Cancer Action, The Eve Appeal, Ovacome and Target Ovarian Cancer. It is based on a generic CAM developed by Cancer Research UK, University College London, Kings College London and Oxford University in 2007-08. This translated version was developed by [insert institution name here].
Can I adapt the Cancer Awareness Measure or any of the cancer specific CAMs?
It is possible to change the order of the CAM modules. There is one exception to this; closed or prompted questions such as ‘The following may or may not be warning signs for cancer. We are interested in your opinion’, should always be asked after open or unprompted questions such as ‘There are many warning signs and symptoms of cancer. Please name as many as you can think of’. This is because the closed/prompted questions essentially provide the answers to the open/unprompted questions. Taking this into account, it is possible to ask the CAM modules in any order you like. It is also possible to change the ordering of items within modules. You may wish to counterbalance or rotate the order to see if this has any
affect on people’s responses.
You can also ask additional questions alongside the CAM questions. For example, if you’re using the CAM to assess the impact of an intervention you will want to ask some more specific questions about the intervention itself. In doing so, you should consider how these questions could affect the respondent’s response to the CAM. For example, you should avoid asking questions that could increase the participant’s knowledge about cancer.
It may be necessary or appropriate to remove certain questions, but we recommend you don’t remove items within a question e.g. a specific barrier from the barriers question.
Where can I access CAM data which has previously been collected by Cancer Research UK?
Data is available to download for research purposes from the UK Data Archive. We are in the process of archiving our 2019 dataset.
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