Cancer Awareness Measure (CAM) Key Findings …...measures of awareness of signs and symptoms of...

Cancer Awareness Measure (CAM) Key Findings Report: Comparing data collected online and face-to-face

Together we will beat cancer

Cancer Intelligence October 2019

CAM: comparing data collected online and face-to-face 2

Reference Connor, K., Hudson, B., Osborne, K & Power, E (2019) Comparing data collected online and face to face. Cancer Intelligence. Cancer Research UK.

Authors Briony Hudson, Katie Connor, Kirstie Osborne and Emily Power: Cancer Intelligence, Cancer Research UK.

Cancer Research UK Cancer Research UK is the world’s largest independent cancer charity dedicated to saving lives through research. We support research into all aspects of cancer through the work of over 4,000 scientists, doctors and nurses. In 2017/2018, we spent £423 million on research institutes, hospitals and universities across the UK. We receive no funding from Government for our research. Cancer Research UK is a registered charity in England and Wales (1089464), Scotland (SC041666) and the Isle of Man (1103) http://www.cancerresearchuk.org/

http://www.cancerresearchuk.org/


Executive summary The Cancer Awareness Measure (CAM) is a validated set of questions designed to reliably assess awareness of cancer. It was developed by Cancer Research UK, University College London, King’s College London and University of Oxford in 2007-8. The survey includes measures of awareness of signs and symptoms of cancer, cancer risk factors, age-related risk, the bowel cancer screening programme and potential barriers to seeing the GP.

Since 2008, the CAM has been used to collect data every two years from a sample representative of Great Britain (England, Scotland & Wales). The CAM has been included in the Opinions and Lifestyle Survey (OLS) which is an omnibus survey ran by the Office for National Statistics (ONS). Data has traditionally been collected via face-to-face in-home interviews.

In 2017 we undertook a parallel run of data collection to explore whether it would be possible to move data collection online. The results of this work revealed that samples collected via online and face to face methods were largely similar, with slight differences in participant characteristics, awareness of cancer signs and symptoms and barriers to help seeking. Based on this work, CAM data will be collected online from 2019.

If you would like any further information or have any queries, please contact Briony Hudson ([email protected]).

https://www.cancerresearchuk.org/health-professional/awareness-and-prevention/the-cancer-awareness-measures-cam

mailto:[email protected]?subject=CAM%20query%20from%20parallel%20run%20report


Contents Reference .............................................................................................................. 2

Authors .................................................................................................................. 2

Cancer Research UK ............................................................................................... 2

Executive summary ................................................................................................ 3

Contents ................................................................................................................ 4

Introduction ........................................................................................................... 6 Primary research aim ...................................................................................... 6 Research objectives ........................................................................................ 6

Methods ................................................................................................................ 7 Responders and recruitment........................................................................... 7 Measures ........................................................................................................ 7 Analysis ........................................................................................................... 8

Weighting .................................................................................................... 8

Differences between samples ...................................................................... 8

Differences in levels of awareness ............................................................... 8

Interactions between survey provider and demographic variables. ............. 8

Results ................................................................................................................... 9 Responders ..................................................................................................... 9 Differences between online and face to face samples .................................. 10

Age ............................................................................................................ 10

Gender ....................................................................................................... 10

Country of residence ................................................................................. 10

Ethnicity ..................................................................................................... 10

Educational attainment ............................................................................. 10

Marital status ............................................................................................ 10

Self-reported health rating ........................................................................ 10

Internet use ............................................................................................... 11

Comparing awareness data collected online and face to face ....................... 11 Cancer awareness ...................................................................................... 11


Barriers to seeing a gp ............................................................................... 16

Awareness of bowel cancer screening ....................................................... 17

Awareness of age related risk .................................................................... 18

Differences in “don’t know” responses ...................................................... 18

Relationship between awareness and sociodemographic variables across samples ...................................................................................................... 19

Discussion ............................................................................................................ 21

Conclusions .......................................................................................................... 22

Appendices .......................................................................................................... 23 Appendix a: hypotheses for differences in awareness and attitudes between surveys and potential explanations ............................................. 23

Appendix b – description of weighting methodology ................................. 24

Appendix c – additional signs and symptoms recall items ......................... 25

Appendix d – additional risk factor recall items ......................................... 27

References ........................................................................................................... 28


Introduction The Cancer Research UK Cancer Awareness Measure (CRUK CAM) is a validated set of questions designed to reliably assess awareness of cancer. It was developed by Cancer Research UK (CRUK), University College London, King’s College London and University of Oxford in 2007-8. The survey includes measures of awareness of signs, symptoms and risk factors for cancer, potential barriers to seeing the GP and awareness of age-related risk and the NHS bowel cancer screening programme.

CRUK use data generated from CAM in several ways, including identifying priority topics and audiences, informing online content, and tracking the UK public’s knowledge, attitudes and awareness of cancer symptoms and risk factors. To date 5 waves of CAM data have been collected using the Office for National Statistics Opinions & Lifestyle Survey (OLS) in 2008, 2010, 2012, 2014, and 2017. A representative sample of the UK are identified and participate in face-to-face, in home interviews. A recently published report on trends in awareness based on this data is available here. Over the years it has been noted that response rates using OLS have declined (from 61% 2008 to 47% in 2017) while costs have increased. Given these trends, Cancer Research UK is interested in exploring the viability of different methods of data collection for the CAM. Many large market research organisations, including the Office for National Statistics plan to increase their use of online and phone data collection. In Great Britain, 90% of households have access to the internet and 73% of people have accessed the internet with a smartphone. While the relationship between questionnaire modality, response rates and accuracy has been described as complex(1) some research reports no difference in the accuracy of self-reported smoking behaviour between data collected using an online questionnaire, a paper-based questionnaire and online interview(2).

Before making the decision to move online, CRUK wanted to explore whether online data collection could deliver a representative sample of the UK, and whether responses collected online may differ from those collected via interviews. This study therefore aimed to explore how future responses to the CAM may be affected by delivering the survey online, by undertaking three parallel runs of data collection using face to face methods (the OLS) and two online providers (Agency A’s online probability sample panel and Agency B’s online panel). Our original hypothesis showing what difference we expected to see can be found in appendix A.

Primary research aim To identify the extent to which public awareness of cancer and attitudes to help-seeking vary by data collection methods (face-to-face vs. online probability sample vs online panel) and sampling method (random vs. non-random).

Research objectives 1. To explore whether online data collection can produce a representative sample of the UK

population. 2. To compare awareness of signs and symptoms and risk factors for cancer, awareness of

bowel screening programmes and barriers to help seeking between data collected online and face to face.

3. To explore whether any relationships observed between awareness and sociodemographic variables were consistent across samples.


Methods Responders and recruitment Face to face data was collected by the Office for National Statistics via the OLS survey while Agency A and Agency B collected online data between January and March 2017. Two online providers were selected to enable comparisons between two online samples to be undertaken.

The Office for National Statistics use stratified probability sampling to select sampling points from a database of 27 million private households in the UK. A random sample of addresses from each sampling point were selected and Interviewers invited one adult respondent from each household to complete the CAM using a face-to-face, computer-assisted interview.

Agency A recruited responders from their online panel who are recruited from a face to face survey. Agency B used ‘active sampling’ in which a sub sample of responders were selected from their 800,000+ panel members based on their age, gender, social class and education. Panel members are recruited from standard advertising and strategic partnerships with a range of websites.

CRUK conducted the analysis of this data in house.

Measures Variables collected in the CAM are outlined in Figure 1 below. Details of the development and content of the CAM can be found in Robb et al (2009)(3).

Figure 1: Variables measured in the CAM

Sociodemographic characteristics

Age, gender, educational attainment, ethnicity, country of residence marital status, internet use and self-reported health status.

Awareness of bowel screening:

“As far as you’re aware, is there an NHS bowel cancer screening programme?” Response options included; yes, no, don’t know and an option to refuse.

Awareness of age related risk:

“Looking at the options on the card, who do you think is most likely to develop cancer?”. Response options included; cancer is unrelated to age, someone in their 20’s. 30’s. 40’s, 50’s, 60’s, 70’s, 80’s and don’t know/not sure.

Barriers to seeing a GP:

Responders indicate whether any of a range of barriers (identified from a previous review of the literature) might put them off seeing a doctor on an 5 point agreement scale from strongly agree to strongly disagree (Table 11)

Awareness of signs and symptoms of cancer (recall and recognition)

Recall: “There are many warning signs and symptoms of cancer, please name as many as you can think of”.

Recognition: could any of the following could be signs of cancer: lump or swelling, persistent unexplained pain, unexplained bleeding, persistent cough or hoarseness, persistent change in bowel or bladder habits, difficulty swallowing, change in the appearance of a mole, a sore that does not heal and unexplained


weight loss.

Awareness of cancer risk factors (recall and recognition)

Recall: “What things do you think affect a person’s chance of developing cancer?”

Recognition: could any of the following could increase a person’s chance of developing cancer: smoking, getting sunburnt, exposure to another person’s smoking, drinking alcohol, having a close relative with cancer, being overweight, being older, not eating many fruits & vegetables, not eating enough fibre, eating too much red or processed meat, not doing much physical activity, infection with HPV (human papillomavirus).

Analysis Weighting Each market research agency provided their own weighting variable to ensure the sample was representative of the GB population and to adjust for non-response where possible (appendix B). Our analyses were carried out using the weighted variable provided by each agency. We did not create a bespoke weighting variable due to the lack of non-response data available.

Differences between samples Weighted sample demographics were compared between the surveys to explore any differences between collected samples. Differences noted between survey responses and GB population statistics were not been tested for significance as confidence intervals for GB data were not available.

Differences in levels of awareness Differences in awareness of cancer signs and symptoms and risk factors between samples were explored while adjusting for demographic differences (age, gender, ethnicity, educational level, marital status and country of residence) with the aim of distinguishing the impact of data collection method. Multivariate logistic regression models were used to calculate adjusted odds ratios for recall and recognition of signs and symptoms, risk factors, barriers to seeking help, and awareness of bowel screening. Only statistically significant variables were included in the final logistic regression models.

Interactions between survey provider and demographic variables. Interaction terms between survey provider and key demographics (gender, age, education level, marital status, ethnicity, country, long term health and internet usage) explored whether data collected by different methods varied by demographic variables, while controlling for any differences in sample characteristics between the surveys. them.


Results Responders 4075 responders completed the CAM between January and March 2017, 20% (n=819) via face to face interviews and 80% (n=3256) online (Agency A, n=1190; Agency B, n=2066).

Objective 1: To explore whether online data collection can produce a representative sample of the GB population and to look at differences between the groups.

The demographic characteristics of online and face to face responders as well as the GB population. When weighted the three samples were generally representative of the GB population for each demographic variable studied (Table 1).

The representativeness of the Office for National Statistics and Agency A samples were similar. The Agency B sample included a larger proportion of responders with a White ethnic background, with a degree, and with frequent use of the internet in comparison to the GB population.

Table 1: Demographic characteristics by survey provider and compared with GB population statistics

Face to face Online GB population

ONS Agency A Agency B

UW % W% UW % W % UW% W %

Age Groups

18-24 4.5% 10.2% 2.9% 8.4% 10.2% 12.0% 15.1%*

25-44 28.3% 33.8% 28.9% 33.4% 24.6% 32.1% 32.1%

45-54 17.2% 18.0% 20.5% 17.9% 24.5% 20.9% 17.2%

55-64 19.5% 15.1% 20.9% 16.9% 19.8% 16.9% 13.9%

65+ 30.4% 22.8% 26.5% 23.1% 20.9% 18.1% 21.7%

Missing - - 0.3% 0.2% - - -

Gender Male 47.1% 49.1% 44.8% 49.9% 48.1% 48.0% 49.3%

Female 52.9% 50.9% 55.2% 50.1% 51.9% 52.0% 50.7%

Ethnicity White 91.7% 87.9% 93.0% 87.5% 93.7% 92.7% 86.0%

Non-white 8.3% 12.1% 7.0% 12.5% 6.3% 7.3% 14.0%

Country of residence

England 85.1% 86.6% 87.5% 84.7% 84.3% 86.3% 86.5%

Scotland 10.6% 8.3% 8.2% 10.2% 10.5% 8.7% 8.6%

Wales 4.3% 5.1% 4.4% 5.1% 5.2% 5.0% 4.9%

Higher Education

Qualification

Degree 27.4% 30.5% 32.9% 26.4% 36.3% 32.2% 27.1%

Below degree 39.9% 42.7% 56.7% 55.7% 51.1% 54.1% 44.7% No qualifications 18.9% 12.7% 9.0% 15.5% 5.7% 6.6% 23.0% Other 13.8% 14.1% 1.3% 2.3% 5.5% 5.5% 5.2% Don't Know - - - - 1.5% 1.6% -

Marital Status Partner 44.6% 50.5% 61.8% 62.6% 63.1% 61.7% 50.9%

No Partner 55.4% 49.5% 38.2% 37.4% 36.9% 38.3% 49.1%

Long Term Illness

Very good 32.7% 37.0% 21.1% 20.1% 15.7% 15.6%

Very good/Good: 76%

Good 41.6% 42.0% 49.6% 48.5% 47.0% 47.4%

Fair 18.3% 15.9% 23.4% 23.7% 28.4% 28.3%

Bad 5.0% 3.6% 4.9% 6.4% 7.4% 7.1% Very bad/Bad: 7%


Very bad 2.0% 1.3% 0.9% 1.3% 1.4% 1.6%

Refused 0.4% 0.3% 0.1% 0.1% - -

Internet Usage

Several times a day 57.5% 64.2% 64.5% 65.6% 79.9% 79.9%

At least once a day: 80%

Once a day 14.4% 14.3% 16.1% 13.2% 14.5% 13.7% 4 - 6 days a week 3.7% 3.1% 4.0% 2.9% 2.9% 3.0% 2 - 3 days a week 4.6% 3.7% 5.1% 4.2% 1.4% 1.6%

Once a week 2.7% 2.1% 2.4% 2.4% 0.4% 0.6% At least weekly: 8%

Less than once a week 2.3% 1.3% 1.9% 2.2% 0.4% 0.4%

Less than weekly: 2%

Never 13.2% 9.2% 6.0% 9.5% 0.5% 0.8%

Did not use in the last 3 months: 10%

Don't Know 0.6% 0.9% - - - -

Refused 1.0% 1.3% - - - -

Differences between online and face to face samples Age The Agency A survey had fewer responders aged 18-24, with just 8.4% of responders falling into this age group. Both online samples contained more adults aged over 65 than the OLS sample and GB population.

Gender The GB population is 49.3% male and 50.7%, this was largely matched across all samples.

Country of residence The proportion of responders recruited from England, Scotland, Ireland and Wales mirrored the GB population in all three samples, although Scottish responders were slightly over represented by Agency A.

Ethnicity All samples included a higher proportion of white responders than the GB population (GB pop; 86%; Agency A; 87.5% Agency B, 93% white)

Educational attainment All three samples were more educated than the GB population. Participant in the Agency B sample had highest educational attainment levels with 32.2% having a degree of higher, compared to 27.1% of the GB population. Just under a quarter (23%) of the GB population reported no educational qualifications, this was much lower in all three collected samples (OLS 12.7%, Agency A, 15.5%; Agency B; 6.6%).

Marital status Both Agency B and Agency A had a larger proportion of responders with a partner (63% and 62% respectively) compared to the GB population (50.9%). The proportion of responders with a partner was very similar between the Office for National Statistics sample (50.5%) and the GB population.

Self-reported health rating


Office for National Statistics survey responders were more likely to say they had ‘very good’ health (37%) in comparison to online samples (Agency A: 20.1%, Agency B: 15.6%). Online responders were more likely to say they were in ‘good’ health (Agency A: 48.5%, Agency B: 47.4%) than the Office for National Statistics responders (42%). Online responders were more likely to say their long-term health was ‘fair’ (Agency A: 23.7%; Agency B: 28.3%) in comparison to Office for National Statistics responders (15.9%). Office for National Statistics responders were less likely to report their health as bad (3.6%) than the online responders (Agency A: 6.4%; Agency B; 7.1%) or the GB population (7%).

Internet use The Internet Access Survey (2017) reported that 80% of the general population use the internet daily. Just under 80% of Office for National Statistics (78.5%) and Agency A (78.8%) responders reported using the internet at least once a day. Over 90% of Agency B responders reported using the internet at this frequency (93.6%).

Objective 2 - To compare awareness of signs and symptoms and risk factors for cancer, barriers to help seeking, awareness of bowel screening programmes and age-related risk between data collected online and face to face.

Comparing awareness data collected online and face to face Cancer awareness Recall of signs and symptoms of cancer On average, Agency A responders recalled significantly more signs and symptoms of cancer than other responders, with an average recall of 5 signs and symptoms of cancer compared with 3 for Office for National Statistics and Agency B responders. There were also more Agency A responders recalling all signs and symptoms compared to the Office for National Statistics (ONS) and Agency B (Table 2).

Table 2: Number of signs and symptoms recalled across each survey provider

0 1 2 3 4 5 6 7 8 9 10 11 12

ONS 9.3% (76)

12.3% (101)

17.8% (146)

24.2% (198)

17.6% (144)

9.0% (74)

5.3% (43)

3.2% (26)

0.7% (6)

0.0% (0)

0.2% (2)

0.1% (1)

0.2%

(2)

Agency A

3.8% (45)

4.2% (50)

6.5% (77)

12.0% (143)

15.1% (180)

14.3% (170)

16.1% (191)

10.3% (122)

6.5% (77)

4.1% (49)

3.7% (44)

1.5% (18)

1.3%

(15)

Agency B

14.0% (289)

10.0% (206)

13.8% (285)

18.1% (374)

16.6% (343)

11.2% (232)

8.6% (178)

2.6% (53)

2.3% (48)

1.3% (27)

0.8% (16)

0.6% (13)

0.1%

(2)

ONS - Office for National Statistics

A higher proportion of Agency B responders answered “don’t know” when asked to recall warning signs and symptoms for cancer than any other group (Agency B: 6.1%, Office for National Statistics; 0.2%, Agency A; 1.8%) (Table 3).

Lump was the most frequently recalled sign/symptom in all three samples with 58.6% of Office for National Statistics responders, 75.1% of Agency A responders and 64.2% of Agency B responders recalling this sign. In comparison to Office for National Statistics responders, Agency B responders were less likely to recall bleeding/blood loss (29% vs. 35%) and sore (1.5% vs. 2.7%). Agency A responders were more likely than Office for National Statistics responders to recall lump (75% vs. 59%), pain (48% vs. 34%), bleeding/blood loss (46% vs. 35%) and blood


in pee (18% vs. 8%). Responders from both online samples were more likely than Office for National Statistics responders to recall change in bowel/bladder habits (Agency A: 46%, Agency B: 34% vs. Office for National Statistics: 27%), blood in poo (Agency A: 26%, Agency B: 17% vs. Office for National Statistics: 9.6%) and tiredness (Agency A: 28%, Agency B: 22% vs. Office for National Statistics: 16%). Additional signs and symptoms that were recalled by responders can be found in Appendix C.

Table 3: Recall of warning signs of cancer in ONS, Agency B and Agency A samples and ONS data from 2014

ONS 2017 Agency A Agency B ONS 2014 UW % W % UW% W% UW % W % W%

Lump 58.00% 58.60% 77.60% 75.10%*** 63.70% 64.20% 64.10%

Bleeding/Blood loss

36.26% 35.02% 48.82% 46.31%*** 30.59% 29.48%***

38.60%

Pain 34.10% 33.60% 52.80% 48.30%*** 37.20% 36.20% 32.60% Change in bowel/bladder habits

26.50% 26.71% 53.11% 46.16%*** 36.21% 34.34%***

32.10%

Unexplained weight loss

27.60% 25.50% 41.60% 35.30%*** 27.50% 25.50% 20.50%

Cough 24.30% 23.50% 36.60% 31.50%*** 23.70% 21.70% - Other 19.40% 19.20% 18.70% 17.10% 15.40% 14.30%**

* -

Mole 19.70% 18.80% 31.30% 26.70%*** 19.50% 17.70% 22.60%

Tiredness 16.20% 15.70% 31.80% 27.50%*** 22.70% 22.40%* 12.10% Blood in poo 9.30% 9.60% 31.50% 26.60%*** 18.50% 17.20%**

* 12.80%

Blood in pee 8.70% 8.30% 20.70% 18.20%*** 10.20% 9.20% 16.40%

Feeling unwell 6.20% 7.60% 8.20% 7.30% 4.40% 5.40%* 5.70%

Breathlessness 6.50% 6.00% 12.40% 9.90%*** 5.90% 5.50% -

Loss of appetite 6.30% 5.90% 11.40% 11.50%** 5.70% 5.40% 4.50%

Changes to breast (specified)

5.10% 5.10% 4.70% 4.20% 2.50% 2.00% -

Nausea 3.90% 4.70% 9.80% 9.10%*** 5.20% 5.50% 4.90%

Coughing up blood 4.60% 4.40% 7.60% 6.80%** 3.70% 4.20% -

Sore 2.90% 2.70% 4.10% 3.40% 1.40% 1.50%** 1.60% Bruising 2.00% 2.00% 3.00% 2.30% 0.90% 0.90%* 1.20%

Changes to breast (unspecified)

1.70% 2.00% 2.20% 2.60% 0.50% 0.50% -

Blurred vision 1.80% 1.60% 4.50% 4.40%** 1.30% 1.10% 2.20% Difficulty swallowing

1.95% 1.47% 5.88% 4.75%** 2.23% 1.67% 0.90%

Looser poo 1.00% 1.30% 2.10% 1.80% 0.90% 1.10% 0.90%

Vaginal bleeding 1.60% 1.30% 3.70% 3.10%** 0.90% 1.00% -

Bloating 1.50% 1.10% 4.50% 3.20%*** 3.00% 3.10%* 0.80%

Skin in lesions - - 26.70% 22.50% 12.20% 11.10% -

Nothing 4.40% 4.90% 0.50% 0.50% 0.10% 0.10% -

Refused 4.80% 4.40% 0.10% 0.10% 0.00% 0.00% - Don’t know 0.40% 0.20% 1.30% 1.80%* 5.70% 6.10%*** 0.50%

*p<0.05, ** p<0.01, *** p<0.001, Question: “There are many warning signs and symptoms of cancer, please name as many as you can think of” ONS - Office for National Statistics W- weighted percentages UW- unweighted percentages


- Item not included in 2014 survey Recognition of signs and symptoms of cancer Over half of Agency A and Agency B responders recognised all 9 signs and symptoms, compared with 45% of Office for National Statistics responders. Agency A responders recognised an average 8 of the 9 signs and symptoms of cancer, compared with Office for National Statistics and Agency B responders who on average recognised 7 (Table 4). Table 4: Number of signs and symptoms recognised across the three samples

Number of symptoms recognised

0 1 2 3 4 5 6 7 8 9

Agency A 0.3% (4)

0.1% (1)

0.3% (3)

0.5% (6)

1.8% (21)

2.7% (32)

7.7% (92)

12.5% (149)

19.7% (235)

54.4% (647)

ONS 2.1% (17)

0.7% (6)

1% (8) 1% (8) 1.7% (14)

4.9% (40)

6.3% (52)

12% (98)

24.9% (204)

45.4% (372)

Agency B 3.4% (70)

0.3% (7)

1.1% (22)

1.6% (34)

2.5% (51)

3.8% (79)

6.6% (136)

10.5% (217)

13.3% (274)

56.9% (1176)


Unexplained lump or swelling was the most commonly recognised symptom in all samples (Office for National Statistics; 94.7%, Agency A; 98.4%; Agency B: 94.7% Table 5). Agency A responders were more likely than Office for National Statistics responders to recognise lump (98% vs. 95%) and unexplained weight loss (96% vs. 89%). For other signs and symptoms there weren’t any significant differences between Agency A and Office for National Statistics responses.

Agency B responders were less likely than Office for National Statistics to recognise lump (94% vs. 95%), changes in bowel habits (88% vs. 90%), persistent cough (83% vs. 84%), unexplained weight loss (87% vs. 89%), persistent difficulty swallowing (76% vs. 78%) and unexplained bleeding (86% vs. 88%). However, Agency B responders were more likely to recognise a sore that does not heal as a sign/symptom of cancer (70% vs. 63%).

Table 1: Percentage of responders from each sample that recognised each cancer sign/symptom.

% Yes, it could ONS Agency A Agency B ONS 2014 UW% W % UW% W% UW% W % W %

Unexplained lump or swelling

95.00% 94.70% 98.70% 98.40%** 94.80% 94.70%** 94.80%

Change in appearance of a mole

94.30% 92.90% 97.70% 95.90% 94.40% 93.90%** 94.00%

Persistent change in bowel or bladder habits

91.20% 89.80% 94.30% 91.40% 88.30% 88.20%** 84.80%

Unexplained weight loss 89.60% 89.10% 97.30% 96.40%*** 87.70% 86.50%* 80.90%

Unexplained bleeding 88.30% 88.00% 91.10% 89.10% 87.60% 86.30%** 80.90%

Persistent cough or hoarseness

84.60% 83.70% 89.30% 86.70% 83.30% 82.80%** 66.00%

Persistent unexplained pain

78.40% 79.00% 85.10% 82.00% 84.00% 83.80% 74.20%

Persistent difficulty swallowing

80.30% 78.30% 80.10% 76.30% 76.50% 76.20%** 75.70%

Sore that does not heal 65.10% 63.00% 70.30% 66.60% 71.20% 70.00%** 58.70%

*p<0.05, ** p<0.01, *** p<0.001


Question: Do you think x could be a sign of cancer? (Yes, it could, no it could not, don’t know/not sure) ONS - Office for National Statistics Recall of risk factors for cancer On average, Agency A responders recalled an average of 5 risk factors recalled compared with Office for National Statistics and Agency B responders who recalled an average of 3 (Table 6) Fewer Agency A responders recalled zero risk factors (3.2%) than Office for National Statistics (8.2%) or Agency B (11.6%).

Table 6: Number of risk factors of cancer recalled across each sample. Number of risk factors recalled

0 1 2 3 4 5 6 7 8 9 10 11 12 13

ONS 8.2% (67)

9.9% (81)

15.4% (126)

21.7% (178)

23.2% (190)

10.6% (87)

7.0% (57)

2.4% (20)

1.0% (8)

0.6% (5)

0.0% (0)

0.0% (0)

0.0% (0)

0.0% (0)

Agency A 3.2% (38)

2.9% (34)

6.8% (81)

11.4% (136)

16.9% (201)

18.3% (218)

17.7% (211)

9.6% (114)

5.5% (66)

3.6% (43)

2.1% (25)

1.6% (19)

0.3% (3)

0.1% (1)

Agency B 11.6% (239)

7.2% (148)

11.6% (240)

18.7% (386)

19.1% (394)

13.4% (277)

11.2% (231)

2.4% (49)

2.3% (48)

1.7% (35)

0.4% (9)

0.2% (4)

0.3% (6)

0.0% (0)


The most frequently recalled risk factor within all samples was smoking, but recall was significantly lower in the Agency B sample (Table 7). The same pattern was seen for alcohol (Agency A; 55%, Office for National Statistics: 54%; Agency B: 43%). A higher proportion of Agency B responders answered “don’t know” to this question (5.4%) (Office for National Statistics:0.1%, Agency A: 0.9%).

Table 7: Recall of risk factors for cancer from the three samples.

% mentioned

ONS Agency A Agency B ONS 2014 UW% W % UW% W % UW% W% W %

Smoking 81.20% 81.90% 84.60% 81.50% 70.50% 68.60%*** 80.30%

Alcohol 52.00% 53.50% 59.10% 55.10% 45.30% 43.30%*** 49.50% Diet (unspecified)

34.40% 36.20% 56.00% 50.30%*** 41.10% 40.00%* -

Sunburnt 23.20% 25.00% 36.70% 30.10%*** 23.20% 21.10% 27.00%

Being overweight

15.40% 14.90% 22.60% 20.00%* 26.70% 25.60%** 10.10%

Exercise 13.30% 13.80% 26.60% 24.10%*** 17.30% 16.40% 13.80%

Occupational exposure

14.40% 13.70% 13.80% 12.20% 9.30% 8.50%*** 12.30%

Genes 11.70% 11.50% 26.10% 23.80%*** 21.20% 19.80%*** 10.70%

Pollution 9.40% 10.40% 15.40% 13.00%** 8.20% 7.80%* 5.50% Family history 10.30% 10.00% 25.90% 22.60%*** 16.20% 15.20%** 11.10%

Lifestyle 9.90% 9.60% 18.90% 18.10%*** 15.40% 14.90%* - Stress 7.80% 8.40% 13.70% 11.70%** 6.10% 5.60%* 6.90% Radiation 5.50% 5.90% 7.70% 6.30% 5.30% 4.70% 3.30% High fat diet 4.60% 4.60% 2.30% 2.10%** 1.00% 1.00%*** 2.40% Red meat 2.90% 3.70% 3.90% 3.90% 3.60% 3.30% 3.30% Sun beds 3.30% 3.70% 4.80% 5.30% 1.90% 2.00% 4.50%

Passive Smoking

3.70% 2.70% 2.30% 3.10% 1.40% 1.50% 3.30%


Older age 2.20% 2.30% 7.50% 6.10%*** 4.80% 4.80%** 2.20%

Mobile phones

0.50% 1.10% 0.30% 0.30% 0.10% 0.20% 0.50%

Many sexual partners

0.70% 1.00% 0.80% 0.60% 1.50% 1.50% 0.60%

Other 12.58% 12.90% 24.03% 24.52%*** 12.15% 12.92% -

Nothing 3.30% 2.80% 0.00% 0.00% 0.40% 0.40% -

Refused 4.80% 4.40% 0.00% 0.00% 0.00% 0.00% -

Don’t know 0.20% 0.10% 0.80% 0.90% 4.80% 5.40%*** 0.20% *p<0.05, ** p<0.01, *** p<0.001, Question: What things do you think affect a person’s chance of developing cancer? ONS - Office for National Statistics

Recall of sunburn (30%), genes (24%) and not enough exercise (24%) as risk factors was significantly higher in the Agency A survey in comparison to Office for National Statistics responders (25%, 12% and 14%).Agency B responders were less likely than Office for National Statistics responders to recall occupational exposure (9% vs. 14%), stress (6% vs. 8%) and high fat diet (1% vs. 5%). Responders from both online surveys were more likely than Office for National Statistics responders to recall being overweight (Agency A; 20%, Agency B: 25%; Office for National Statistics: 15%), family history (Agency A: 23%, Agency B:15%, Office for National Statistics: 10%), lifestyle (Agency A: 18%, Agency B: 15%; Office for National Statistics: 10%), diet (Agency A; 50%, Agency B: 40% Office for National Statistics: 36%) and older age (Agency A; 6%, Agency B; 5%, Office for National Statistics: 2%) as risk factors of cancer. The only risk factors that Office for National Statistics responders were more likely to recall than online responders, was having a high fat diet (Office for National Statistics: 5%, Agency A; 2%, Agency B: 1%). Additional risk factors that were recalled by responders are outlined in Appendix D.

Recognition of risk factors for cancer On average, Agency A and Agency B responders recognised more risk factors (an average of 9 risk factors) than Office for National Statistics responders who recognised an average of 8 of the 12 promoted (Table 8).

Table 2: Average number of risk factors of cancer recognised across survey providers.

Average recognition 0 1 2 3 4 5 6 7 8 9 10 11 12

ONS 2.2% (18)

0.5% (4)

0.6% (5)

4.3% (35)

6% (49)

7.6% (62)

8.7% (71)

14.5% (119)

11% (90)

12.2% (100)

13.8% (113)

11.5% (94)

7.2% (59)

Agency A 0.2% (2)

0.4% (5)

1.2% (14)

1.4% (17)

4.5% (53)

6.9% (82)

8.7% (103)

12.4% (148)

9.5% (113)

12.4% (147)

14.1% (168)

14.5% (173)

13.9% (165)

Agency B 2.9% (59)

0.6% (13)

1.3% (26)

2.4% (49)

4.9% (102)

6.7% (139)

7.5% (155)

8.8% (181)

9.4% (194)

9.8% (203)

10.5% (216)

12.2% (252)

23.1% (477)


Both Agency B and Agency A responders were more likely than Office for National Statistics responders to recognise being overweight (Agency A; 73%, Agency B; 74%, Office for National Statistics: 67%), having a family history of cancer (Agency A; 77%, Agency B;69%; Office for National Statistics:68.5%), not doing enough physical activity (Agency A; 55%, Agency B; 56%; Office for National Statistics; 50%), eating too much red/processed meat (Agency A;58%, Agency B: 61%; Office for National Statistics: 52%) and infection with HPV (Agency A;41%,Agency B; 49%, Office for National Statistics:29%) as risk factors of cancer (Table 9). Agency B responders were more likely than Office for National Statistics responders to recognise older age (68% vs. 60%) but less likely to recognise smoking (95% vs. 96%) as a risk factor of cancer.


Table 3: Percentage of responders from each sample that recognised each risk factor for cancer.

% Yes ONS Agency A Agency B ONS 2014

UW% W % UW% W % UW% W % W % Smoking 96.60% 96.30% 98.60% 98.60% 95.70% 95.40%** 97.90% Getting sunburnt 94.50% 94.00% 96.20% 94.60% 94.30% 93.70% 96.40% Exposure to another person’s smoking 87.80% 88.60% 89.70% 88.20% 86.40% 86.10%** 88.30%

Drinking alcohol 76.60% 78.90% 80.30% 78.60% 78.80% 78.60% 75.00%

Having a close relative with cancer 68.50% 68.50% 79.70% 76.60%*** 77.80% 76.60%* 71.70%

Being overweight 66.70% 66.60% 73.80% 72.80%** 73.70% 74.10%*** 62.30%

Being older 58.60% 60.10% 62.90% 57.10% 68.20% 67.80%*** 58.90%

Not eating many fruits & vegetables 50.30% 52.80% 57.60% 53.30% 55.00% 53.60% 48.30%

Not eating enough fibre 53.10% 52.60% 51.80% 46.40% 51.30% 49.10% 49.50%

Eating too much red or processed meat 49.50% 51.50% 62.00% 57.90%*** 62.50% 61.00%**

* 49.40%

Not doing much physical activity 48.40% 49.70% 57.40% 56.10%** 56.60% 55.10%** 48.20%

Infection with HPV (human papillomavirus)

28.10% 29.20% 42.90% 41.30%*** 48.90% 48.90%*** 29.40%

*p<0.05, ** p<0.01, *** p<0.001, Question: Do you think x can increase a person’s chance of developing cancer? (Yes, it could, no it could not, don’t know/Not sure) ONS - Office for National Statistics

Barriers to seeing a GP On average, Agency A responders endorsed 4 barriers to visiting the doctor, Agency B responders endorsed 4 and Office for National Statistics responders endorsed 3 barriers (Table 10).

Table 4: Number of barriers to seeing a GP across survey providers.

N of barriers endorsed

0 1 2 3 4 5 6 7 8 9 10 11 12 13 14

Agency A 15.2% (181)

10.7% (127)

11.4% (136)

12.5% (149)

12% (143)

9.4% (112)

7.7% (92)

6.4% (76)

6.6% (79)

3.2% (38)

2% (24)

1.8% (21)

0.7% (8)

0.2% (2)

0.2% (2)

ONS 15% (123)

15.1% (124)

14.4% (118)

15.1% (124)

14.4% (118)

8.3% (68)

8.2% (67)

4.4% (36)

2.1% (17)

1.5% (12)

0.6% (5)

0.4% (3)

0% (0)

0.5% (4)

0% (0)

Agency B 16.2% (334)

9.8% (202)

10.7% (221)

9.9% (205)

11.5% (238)

8.5% (175)

8.2% (170)

6.3% (130)

5.4% (112)

4.9% (102)

2.9% (59)

3.1% (64)

1.1% (22)

0.8% (17)

0.7% (15)


Overall, online survey responders were significantly more likely to endorse the barriers to seeing a GP (Table 11) than Office for National Statistics responders. The most frequently endorsed barrier for Office for National Statistics and Agency B responders was “I find it difficult to get an appointment at a convenient time”, and for Agency A responders it was “I don’t like having to talk to the GP receptionist”.

Table 5: Percentage of responders that endorsed the following barriers to going to the doctor.

Strongly agree/ agree ONS Agency A Agency B ONS 2014


UW% W % UW% W % UW% W % W %

I find it difficult to get an appointment at a convenient time 44.10% 45.30% 46.40% 49.70% 46.00% 49.00% 42.90%

I find it difficult to get an appointment with a particular doctor

44.30% 44.60% 46.80% 46.70% 45.60% 47.10% 42.10%

I don’t like having to talk to the GP receptionist about my symptoms 43.70% 42.80% 50.30% 50.90%** 45.80% 46.50% 39.70%

I don’t want to be seen as someone who makes a fuss 34.40% 34.10% 36.80% 37.40% 40.20% 39.50% 34.90%

I would be worried about what they would find wrong with me 25.90% 27.30% 35.50% 39.30%*** 37.70% 40.30%*** 28.20%

I would be worried about wasting the doctors time 22.60% 21.70% 28.30% 29.30%* 34.80% 35.60%*** 20.00%

I would be worried about what test they might want to do 17.60% 20.60% 24.10% 28.70%*** 28.50% 31.10%*** 20.20%

I would be worried the doctors wouldn’t take my symptoms seriously

17.50% 19.00% 26.10% 29.70%*** 32.60% 34.80%*** 19.00%

I've had a bad experience at the doctors in the past 16.00% 17.50% 19.20% 19.30% 21.30% 22.70% 16.00%

I would be too busy to make time to go to the doctor 13.10% 15.80% 18.80% 20.70%** 19.70% 21.60%** 16.30%

I have too many other things to worry about 13.80% 14.60% 20.70% 23.50%** 21.40% 23.10%** 14.60%

My doctor is difficult to talk to 8.20% 8.30% 10.80% 12.40% 13.50% 15.00%** 7.70% I find it embarrassing to talking to the doctor about my symptoms 6.80% 7.70% 15.40% 16.20%*** 22.00% 24.00%*** 10.30%

I wouldn’t feel confident talking about my symptoms with the doctor

6.70% 6.00% 12.20% 14.80%*** 17.70% 18.80%*** 8.70%

*p<0.05, ** p<0.01, *** p<0.001, Question: “Which of the following might put you off going to the doctor?” ONS - Office for National Statistics

Both Agency B and Agency A responders were significantly more likely than Office for National Statistics responders to endorse the following eight statements:

• I find it embarrassing to talking to the doctor about my symptoms • I would be worried about wasting the doctors time • I would be too busy to make time to go to the doctor • I have too many other things to worry about • I would be worried about what they would find wrong with me • I would be worried about what test they might want to do • I wouldn’t feel confident talking about my symptoms with the doctor • I would be worried the doctors wouldn’t take my symptoms seriously

Agency B responders were more likely than Office for National Statistics responders to endorse the statement “my doctor is difficult to talk to” but the difference between the Agency A and Office for National Statistics responders was not significant for this statement.

Awareness of bowel cancer screening Most responders were aware of the bowel cancer screening programme. There were no statistically significant differences between the surveys (Table 12).

Table 12: Percentage of responders that were aware of the NHS bowel screening programme.



UW % W% UW% W% UW% W %

Yes 64.8% 60.0% 65.7% 59.4% 63.7% 63.7%

No 14.4% 16.1% 7.8% 8.7% 14.1% 14.1%

Don’t Know 19.8% 22.6% 26.5% 32.0% 22.2% 22.2%

Refused 1.0% 1.3% - - - -

Question: “As far as you’re aware, is there an NHS bowel cancer screening programme?” ONS - Office for National Statistics

Awareness of age related risk The proportion of responders who said cancer is unrelated to age varied across the surveys. Agency A responders were more likely to say that cancer is unrelated to age than Office for National Statistics responders, however there was no significant difference between Agency B and Office for National Statistics responders (Table 13).

Table 6: Awareness of age related risk from responders from all surveys


UW% W% UW% W% UW% W % Cancer is unrelated to age 61.10% 60.90% 67.30% 71.30%*** 59.80% 59.80% Someone in their twenties 0.10% 0.00% 0.20% 0.20% 0.30% 0.30% Someone in their thirties 0.20% 0.30% 0.10% 0.10% 0.70% 0.70% Someone in their forties 2.70% 3.40% 1.70% 2.40% 2.50% 2.50% Someone in their fifties 8.20% 8.60% 5.30% 4.60% 7.30% 7.30% Someone in their sixties 8.20% 8.00% 7.70% 6.40% 10.10% 10.10% Someone in their seventies 5.40% 5.00% 4.80% 3.80% 5.30% 5.30% Someone in their eighties 5.60% 5.60% 6.30% 5.30% 4.80% 4.80% Don't know/not sure 7.90% 7.20% 6.60% 5.90% 9.10% 9.10%

Refused 0.60% 1.00% - - - - *p<0.05, ** p<0.01, *** p<0.001 Question: Looking at these options, who do you think is most likely to develop cancer? ONS - Office for National Statistics

Differences in “don’t know” responses Online responders were more likely to respond with “don’t know” to recall question about signs and symptoms of cancer than Office for National Statistics responders. Agency B (but not Agency A) responders were also more likely to respond with “don’t know” to the risk factor recall question than Office for National Statistics responders. For awareness about NHS bowel screening programmes, Agency A responders were most likely to answer with “don’t know” and for age related risk, Agency B responders were most likely to answer with “don’t know”. The differences however were not significant for either question.


Objective 3. To explore whether any relationships between awareness and sociodemographic variables were consistent across the samples

Relationship between awareness and sociodemographic variables across samples Awareness of signs and symptoms of cancer Recall: For responders living Scotland, those recruited by Agency B were significantly less likely to recall bleeding/blood loss as a sign of cancer compared to responders recruited by Agency A. For male responders, those recruited by Office for National Statistics were significantly less likely to recall difficulty swallowing then those recruited by Agency A. In addition, male responders recruited by Agency B were less likely to recall cough as a sign of cancer than males recruited by Office for National Statistics. There were significantly less men recalling cough in the Agency B survey in comparison to the Office for National Statistics survey. No other significant interactions were observed. Recognition: There were no significant interactions between the type of data collection and different demographic groups for recognition of signs and symptoms of cancer.

Awareness of risk factors for cancer Recall: Significantly less women recalled alcohol in the Office for National Statistics survey in comparison to the Agency A responders. Significantly more people with a degree or ‘other’ qualification recalled diet as a risk factor for cancer in the Agency B survey compared to the Office for National Statistics survey. A higher proportion of Agency B responders with an ‘other’ type of qualification recalling “being overweight” as a risk factor in comparison to Office for National Statistics responders with an ‘other’ type of qualification. Recognition: When the variables interact (i.e. an interaction between survey provider and sex, and an interaction between survey provider and country) it shows there were significantly fewer responders in both England (83%) and Wales (3.7%) that recognised family history as a risk factor of cancer in the Office for National Statistics survey compared to responders in England and Wales in the Agency B (England: 84%, Wales 5.5%) and Agency A (England: 88%, Wales: 4.4%) surveys. However, of those responders in Scotland, the highest proportion to recognise family history as a risk factor were in the Office for National Statistics survey (13.0%, Agency B: 10.4%, Agency A: 7.5%). There were also differences by sex, with significantly fewer females (54.2%) recognising family history as a risk factor in the Office for National Statistics survey than female Agency A (59.0%) and Agency B (56.6%) responders. There were significantly fewer responders in the Office for National Statistics survey with ‘other’ qualifications recalling “not eating many fruits and vegetables” as a risk factor in comparison to those in the Agency A and Agency B surveys with ‘other’ qualifications. Male Agency A responders were more likely (46.7%) to recognise “not doing enough physical activity” as a risk factor in comparison to Agency B male responders (45.1%).

Awareness of bowel screening There were no statistically significant differences between demographic groups across the samples.


Barriers to seeing a GP Office for National Statistics responders with a partner were more likely to agree that difficulty getting an appointment at a convenient time would be a barrier compared to Agency B responders with a partner.

Awareness of age-related risk Agency A responders were more likely than Office for National Statistics and Agency B to say ‘cancer is unrelated to age’.


Discussion This analysis explored the viability of moving from face to face to online data collection for the Cancer Research UK’s Cancer Awareness Measure. We compared three parallel runs using face to face data collection (Office for National Statistics) and online data collection (Agency A and Agency B). Differences in sample characteristics and awareness of cancer signs and symptoms, risk factors, age related risk, awareness of bowel screening campaigns and barriers to visiting the doctor were explored.

Overall, the data collected online provided representative samples of the population and minor differences were observed both between online and face to face samples. Previous research has suggested that online research may not be as representative as face to face interviewing(4), but this often based on the type of recruitment procedures that precede data collection. Within this research, each market research agency utilised procedures to ensure their samples were as representative as possible of the GB population.

The sample recruited by Agency A appeared to be the most representative online sample. Investigating the differences in responses by the different demographic groups within the samples, it was shown that Agency A followed the same trend as either Agency B or Office for National Statistics, however the level of recall and recognition is consistently higher than the other surveys. Educational levels did not differ greatly between the three samples, but were higher than the GB population

Overall, Agency A responders were significantly more likely to recall signs and symptoms and risk factors of cancer, recalling on average 5 signs and symptoms and 5 risk factors, compared to the 3 signs and symptoms and risk factors recalled by both Agency B and Office for National Statistics responders. This finding implies that Agency A responders may be more engaged and knowledgeable than the other survey responders. Whilst the sample is representative of the population, their awareness levels are higher than the other two samples, which could lead to inflated awareness levels.

Recall of certain signs and symptoms and risk factors varied by demographic groups. Recall of bleeding/blood loss, cough and difficulty swallowing had significant interactions between sex and survey provider. For responders living Scotland, those recruited by Agency B were significantly less likely to recall bleeding/blood loss as a sign of cancer compared to those recruited by Agency A. Overall, recognition of risk factors was higher in the online surveys, with Agency A and Agency B recognising on average more risk factors. The online surveys were more likely to recognise 5 of the 12 risk factors compared to Office for National Statistics.

Recognition of signs and symptoms did not vary by demographic groups across the surveys, however, recognition of risk factors varied by sex, higher education and country. These patterns differed with significantly fewer females recognising family history as a risk factor of cancer in the Office for National Statistics survey in comparison to the online surveys, and significantly fewer males recognised not doing enough physical exercise as a risk factor of cancer in the Agency B survey, compared to Agency A. Fewer responders in both England (83%) and Wales (3.7%) recognised family history as a risk factor of cancer in the Office for National Statistics survey compared to Agency B (England: 84%, Wales 5.5%) and Agency A (England: 88%, Wales: 4.4%) responders. However, of those responders in Scotland, the highest proportion to recognise family history as a risk factor were in the Office for National Statistics survey (13.0%) in comparison to those responders from Scotland in the Agency B


(10.4%) and Agency A (7.5%) surveys. The reasons for these variations are not clear.

In this research, online responders were more likely than face to face responders to endorse barriers to help seeking. Responders may have found it easier to endorse barriers to visiting the doctor with the context of anonymity afforded by online data collection, in comparison to face to face data collection. Previous research has found that socially desirable behaviours are less likely to be disclosed in interviews than online questionnaires(5). In addition, disease prevalence rates are much closer to known rates when using internet studies than in data collected over the telephone or face to face(6).

Agency B responders were more likely than Agency A responders to respond to recall questions around signs, symptoms and risk factors with “don’t know”. Office for National Statistics responders were less likely to use this response option for recall questions. This may reflect the nature of the panel survey, with responders rushing through the questions to finish the survey quickly. Previous research within student populations has suggested that responders completing online surveys are more likely to answer “don’t know” to questions than responders completing the same survey face to face(7). Another possibility is that interviewers conducting face to face interviews may have been able to elaborate upon questions and encourage responders to respond. This is explicitly advised against in the guidance provided with the CAM questionnaire. Conversely, other research suggests that by conducting questionnaires online, non-response to open ended questions can be reduced(8).

In this study while the level of “don’t know” responses was higher within recall questions; this was not observed for questions around awareness of age-related risk of NHS bowel screening programmes. Consideration will be applied regarding how to overcome this challenge in future work with online samples.

Conclusions The relationships between questionnaire mode and responses obtained are complex. In this research we observed that the online samples collected were generally representative of the GB population. Variables in which the largest differences between the GB population and samples were observed (ethnicity, education and marital status) were consistent between Office for National Statistics and online samples. This information will be useful in helping us to tailor our recruitment strategy to ensure that we recruit a sample that is as representative of the GB population as possible in future CAM research. Based on this research, future CAM data will be collected online, rather than through face to face data collection methods. We will not attempt to continue trends analysis from 2008, when the CAM began but will make a clean break and begin data collection afresh from 2019. Year on year comparisons will be made until a sufficient number of waves have been collected to warrant further analyses of trends over time.

The flexibility of moving to online data collection should enable the CAM to explore a new and wider range of issues related to the early diagnosis, prevention and treatment of cancer. This could inform and support Cancer Research UK activities and campaigns moving forwards.


Appendices Appendix A: Hypotheses for differences in awareness and attitudes between surveys and potential explanations

CAM item General mode differences

Differences due to wording of Q and any further prompts or instructions

Differences in the way responses were coded

Outcome

All items More extreme responses in ONS vs NC & YG because could be easier to recall and respond at extremes when giving face-to-face responses

Higher recall and recognition observed in NC and YG than ONS

Recall of signs/symptoms & risk factors

Lower recall in NC and YG vs ONS because have to write down responses vs say them out loud

Could observe: a) lower recall in NC and YG vs ONS due to less prompting

b) higher recall in NC & YG due to anchoring by the number of boxes (6) shown for responses to be entered

Potential for each provider to code responses differently (e.g. code ‘coughing up blood’ as ‘cough’, ‘blood’ and ‘coughing up blood’ rather than just ‘coughing up blood’)

Higher recall in NC vs ONS and YG

Recognition of signs/symptoms & risk factors

Lower recognition in NC & YG vs ONS could be due to lower social desirability

Higher recognition in NC & YG could be due to lack of care reading and responding to questions and /or more knowledgeable sample because part of online panel

No – only 6 options so should all be coded in the same way

NC higher recognition of risk factors and signs and symptoms

YG higher recognition of risk factors vs ONS

Attitudes towards help-seeking

More negative attitudes in NC & YG vs ONS due to lower social desirability

More honest answers in Nc & YG as they don’t have to admit these to another person

No – only certain number of options so should all be coded in the same way

Higher proportion of responders reporting barriers to help seeking in NC and YG

Awareness of bowel screening programme

Lower ‘yes’ responses without face to face interaction – it’s ok that you don’t know.

More likely to choose extreme ages (<10, >80) as no one to say ‘that seems a bit low/high’

No – only certain number of options so should all be coded in the same way

No significant differences in awareness between the surveys.

ONS = Office for National Statistics NC = Agency A YG = Agency B


Appendix B – description of weighting methodology Agency A

Non-response for Agency A’s probability panel surveys can occur at three stages: non-response at the survey used for recruitment, refusal to join the panel at the end of that interview and non-response in the survey of panel members itself. We compute a weight to account for non-response at each of these three stages. The final weight is the product of these three weights. We use this three-stage system because the variables underlying non-response could be different at each stage. With this system we also can maximise the use of all the information available from the face to face survey. These are the three weights we have computed:

a. Face to face survey weight: the panel members were recruited from a face to face 2015 and 2016 survey. Firstly, the face to face survey weights account for unequal chances of selection in the face to face sampling. Secondly, a non-response model is used to produce a non-response weight. This weight adjusts for non-response at the face to face survey using: region, type of dwelling, whether there were entry barriers to the selected address, the relative condition of the immediate local area, the relative condition of the address, the percentage of owner occupied properties in quintiles and population density. Finally, the face to face 2015 and face to face 2016 weights make the sample of face to face respondents representative of the general British population in terms of gender, age and Government Office Region (GOR).

b. Panel weight: this weight accounts for non-response at the panel recruitment stage where some people interviewed as part of the face to face survey chose not to join the panel. A logistic regression model has been used to derive the probability of response of each panel member; the panel weight is computed as the inverse of the probabilities of response. This weight adjusts the panel for non-response using the following variables: age and sex groups, GOR, face to face year, household type, household income, education level, internet access, ethnicity, tenure, social class group, economic activity, political party identification, and interest in politics. The resulting panel weight has been multiplied by the face to face 2015 and 2016 weights, so the panel is representative of the population.

c. Survey weight: this weight is to adjust the bias caused by non-response to this particular panel survey. A logistic regression model has been used to compute the probabilities of response of each participant. The panel survey weight is equal to the inverse of the probabilities of response. The initial set of predictors used to build the model was the same as for the panel weight; and at this wave the final set of variables used was also the same. The final survey weight is the result of multiplying the survey weight by the compounded panel weight.

Agency B

All reputable research agencies weight data as a fine-tuning measure and at Agency B we weight by age, gender, social class, region, level of education, how responders voted at the


previous election, how responders voted at the EU referendum and their level of political interest. Targets for the weighted data are derived from four sources:

1. The census

2. Large scale random probability surveys, such as the Labour Force Survey, The National Readership survey and the British Election Study

3. The results of the 2015 general election.

4. Official ONS population estimates

ONS

Despite the considerable efforts made by interviewers to maximize response rates, a proportion of selected individuals decline to take part or cannot be contacted. To compensate for possible non-response bias, the Omnibus sample is divided into weighting classes of age-group by sex and Government Office Region. Population data for these sub-groups are provided by ONS, and survey data are grossed to population totals within these sub-groups.

Appendix C – additional signs and symptoms recall items

ONS Agency B Agency A ONS 2014

UW% W % UW% W % UW% W % W %

Discomfort 0.50% 0.80% 0.60% 0.70% 1.20% 0.90% - Indigestion 0.60% 0.60% 0.50% 0.40% 1.30% 1.10% 0.50% Red/white patch in mouth 0.50% 0.60% 0.80% 0.70% 0.40% 0.50% 0.30%

Feeling weak 0.50% 0.40% 2.10% 2.20% 1.40% 1.60% 1.30% Heartburn 0.40% 0.30% 0.60% 0.60% 0.60% 0.50% 0.10% Food sticking 0.00% 0.00% 0.10% 0.10% 0.20% 0.10% 0.00%

Hoarseness 0.10% 0.00% 0.60% 0.60% 0.80% 0.60% 0.10%

Lump in tummy 0.10% 0.00% 0.00% 0.00% 0.30% 0.20% -

Jaundice - - 1.10% 0.90% - - - Discharge - - 1.80% 2.00% - - -

Itching - - 0.70% 0.70% - - - Tumours - - 0.80% 0.70% - - - Unexplained weight gain - - - - 1.50% 1.40% -

Hair loss - - - - 2.20% 3.00% -

Dizziness - - - - 2.50% 2.30% - Night sweats - - - - 1.50% 1.20% - Sore throat - - - - 2.00% 1.70% - Medical symptoms - - - - 6.00% 5.60% -

Vague response - - - - 12.40% 14.80% -

Cause not a sign/symptom - - - - 1.30% 1.40% -


Appendix D – Additional risk factor recall items

% mentioned ONS Agency B Agency A ONS 2014

% Weighted % % Weighted % % Weighted % Weighted %

Virus 0.50% 0.80% 0.30% 0.30% 1.20% 0.90% 0.40%

HRT 0.20% 0.70% 0.60% 0.50% 1.20% 1.30% 0.30%

Being underweight 0.90% 0.60% 0.50% 0.70% 0.00% 0.00% 0.40%

Food additives 0.70% 0.50% 0.40% 0.30% 0.60% 0.30% 0.90%

Low fibre diet 0.20% 0.30% 0.30% 0.10% 0.60% 0.70% 0.30% Power lines 0.40% 0.30% 0.10% 0.20% 0.50% 0.40% 0.30% Pesticides 0.40% 0.30% 0.60% 0.60% 0.60% 0.60% 0.20% Fruit and veg 0.20% 0.20% 1.20% 1.00% 2.00% 2.00% 0.40% Radon 0.10% 0.20% 0.10% 0.10% 0.40% 0.30% 0.10% High salt diet 0.40% 0.20% 0.20% 0.20% 0.20% 0.10% 0.10%

Burnt food 0.40% 0.20% 0.90% 0.60% 1.30% 1.10% -

HPV 0.10% 0.10% 0.40% 0.20% 0.30% 0.30% 0.10% Deodorants 0.10% 0.10% 0.10% 0.10% 0.10% 0.10% 0.20%

Shift working 0.20% 0.10% 0.10% 0.00% 0.00% 0.00% 0.20%

Hep B 0.00% 0.00% 0.00% 0.00% 0.20% 0.10% 0.00% Hep C 0.00% 0.00% 0.00% 0.00% 0.20% 0.10% 0.00% H pylori 0.00% 0.00% 0.00% 0.00% 0.00% 0.00% 0.00%

e-cigarettes 0.00% 0.00% 0.00% 0.00% 0.10% 0.30% -

C pylori - - 0.00% 0.00% - - - Drugs - - 5.40% 5.40% 8.30% 8.30% - Chemicals - - 4.60% 4.10% 8.20% 6.30% - Environmental - - 5.10% 4.10% 13.60% 11.80% - Injury - - 0.70% 0.70% 3.40% 3.80% - Luck - - 3.10% 3.20% - - - Depression - - - - 0.80% 0.90% - Weight (not specific) - - - - 4.50% 4.40% -

Delay in check ups - - - - 0.30% 0.40% - Over eating - - - - 1.60% 1.30% - Vague response - - - - 5.20% 5.30% -


References 1. Duffy B, Smith K, Terhanian G, Bremer J. Comparing data from online and face-to-face

surveys. The Market Research Society 2005;47(6):615-39. 2. W. SM, Hassan MM, Taylor HJ, D. NR, G. MR, S. CS, et al. Self-Report of Tobacco Use Status:

Comparison of Paper-Based Questionnaire, Online Questionnaire, and Direct Face-to-Face Interview—Implications for Meaningful Use. Population Health Management. 2014;17(3):185-9.

3. Robb K, Stubbings S, Ramirez A, Macleod U, Austoker J, Waller J, et al. Public awareness of cancer in Britain: a population-based survey of adults. British Journal Of Cancer. 2009;101:S18.

4. Wright K. Researching Internet-Based Populations: Advantages and Disadvantages of Online Survey Research, Online Questionnaire Authoring Software Packages, and Web Survey Services. Journal of Computer-Mediated Communication. 2005;10(3).

5. Comley P. Innovation in online research – who needs online panels? MRS Research Conference Paper 362003.

6. Taylor H, Krane, D. & Thomas, R.K. How does social desirability affect responses? Differences in telephone and online. The American Association for Public Opinion Research (AAPOR) 60th Annual Conference, 20052005.

7. Heerwegh D, Loosveldt G. Face-to-Face versus Web Surveying in a High-Internet-Coverage PopulationDifferences in Response Quality. Public Opinion Quarterly. 2008;72(5):836-46.

8. Denscombe M. Item non-response rates: a comparison of online and paper questionnaires. International Journal of Social Research Methodology. 2009;12(4):281-91.

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