Change in public awareness of colorectal cancer symptoms following the Be Cancer Alert Campaign in the multi-ethnic population of Malaysia

Colorectal cancer (CRC) is the commonest cancer in Malaysian men (age-standardised incidence rate 14.8/ 100,000), the second most common cancer in Malaysian women (age-standardised incidence rate 11.1/ 100,000) [1] and the third commonest cause of cancer deaths in Malaysia [2]. About 66% of male and 65% of female CRC cases are detected at a late stage (stage 3 or 4) thereby leading to an increased risk of cancer death. Late presentation is due, at least partly, to low cancer awareness and misbeliefs about cancer. For example, research indicates that there is a lack of awareness among Malaysians about CRC symptoms [3‐5], i.e. only 40.6% of 2379 participants recognised ‘blood in stool’ as a warning sign for CRC [3]. Other causes of delayed detection and diagnosis include denial, negative perceptions of the disease, the over-reliance on traditional medicine, misperceived risk, emotional barriers and negative perceptions towards screening [6‐8]. Cancer awareness campaigns and their evaluation are sparse in low- and middle-income countries (LMICs) such as Malaysia.

Collaborators from Malaysia (University of Malaya, Monash University Malaysia, National Cancer Society Malaysia (NCSM) and the Ministry of Health Malaysia (MoH)) and Queen’s University Belfast designed and implemented the Be Cancer Alert Campaign (BCAC) [9, 10], a culturally acceptable mass media campaign for Malaysians, based on successfully implemented campaigns in the UK [11, 12]. This research assessed the reach of the BCAC-CRC campaign as well as campaign impact, i.e. improved knowledge about CRC symptoms, perceived confidence to detect symptoms, and self-efficacy to visit a doctor to discuss CRC symptoms and health service use, i.e. number of CRC screenings undertaken (Immunochemical Faecal Occult Blood Test (iFOBT) and colonoscopies) and the number of CRC cases diagnosed.

This was a quasi-experimental study with before- and after- evaluation assessments. The protocol for the evaluation of the BCAC-CRC was published previously [9] and it is explained here in brief.

Malaysians with cancer tend to present to cancer services in the later stages of the disease, and this late presentation has severe, often fatal, consequences. Therefore, increasing awareness about cancer signs and symptoms could contribute to earlier presentation and improvements in cancer outcomes. Despite numerous studies describing low CRC awareness amongst Malaysians, this was the first study that developed and evaluated a public health intervention in the form of a mass media campaign that aimed to improve CRC awareness. Generally, the results appeared to indicate low awareness about CRC signs and symptoms pre-campaign including prompted symptoms (ranging from 35 to 54% for different symptoms) and confirmed the need to design and implement ways in which to improve cancer awareness and nurture preventative efforts and early presentation. For example, pre-campaign awareness level about ‘blood in stool’ for the English Be Clear on Cancer (BCOC) was 55% compared to 46% in Malaysia [19]. The results of the evaluation, overall, indicated that symptom awareness improved after campaign delivery and that, more specifically, prompted awareness about all CRC symptoms improved among participants who saw any of the BCAC-CRC materials and did not recognise the symptoms as baseline, compared to participants who did not recall seeing or hearing the campaign.

This post-campaign increase in awareness may be related to the way in which the campaign materials were adapted and presented [14] and informed by best available evidence [10]. For example, print advertisements that highlighted the colon/rectum and the radio advertisements that emphasised paying attention to bowel habits were adapted to suit the multi-ethnic population and culture of Malaysia. ‘Blood in stool’ was the main symptom that was highlighted in TV and radio advertisements. Approximately 60% of BCAC-recognisers compared to 40% of non-recognisers who were unaware of this symptom at baseline reported after the campaign that blood in stool was a key important sign of CRC. Findings from the English BCOC four-month campaign reported a smaller increase in awareness about ‘blood in stool’, i.e. 14% post-campaign, though data comparing improvement between BCAC recognisers and non-recognisers was not reported [19].

Posters in clinics and TV advertisements were the two most commonly recognised (unprompted) media before participants were shown the three advertisements, which is in line with findings from the BCA primer and lung cancer campaigns [16]. Sixty-six percent of the study population reported that they saw one or more BCAC-CRC advertisements compared to about 70% who noticed any BCOC materials [20]. Recognition of TV advertisements was higher in the BCOC campaign (7 out of 10) compared to BCAC-CRC (5 out of 10) [20]. This result may suggest that a similar reach can be achieved with a mass media campaign of a shorter duration. Mass media campaigns do not appear to reach older participants, perhaps, because people aged over 60 years old feature rarely in such campaigns [21] including the BCAC. The BCAC found it a challenge to recruit older survivors to share their stories on TV or online. Findings from our evaluation and the BCOC campaign indicate that participants aged 75 years or above were significantly less likely to notice advertisements [20]. In contrast to the findings relating to older people, female participants in our evaluation and in the BCOC survey were more likely than men to notice advertisements. Findings from a relatively small cross-sectional USA study that aimed to assess whether or not years of CRC campaign activities including the Centre for Disease Control Prevention’s Screen for Life campaign improved awareness about campaign-related messages, did not find a significant difference between participants aged below or above 65 years [22].

Findings from the evaluation of the Northern Irish BCA primer campaign indicated that the extent of the ‘reach’ to lower socio-economic groups was relatively poor [16]. Whilst the BCAC-CRC was noticed least by participants without formal education, it reached participants from low-income households equally as participants from middle- or high-income backgrounds. Regarding coverage of ethnic groupings, the BCAC-CRC seemed to reach Malays and Indians but not Chinese participants despite the fact that the TV advertisement was aired for 5 weeks on one of the most commonly watched Chinese TV channels (8TV). Poor reach may be related to the lower proportion of Chinese participants who agreed to participate in the surveys and may suggest that there is a need to consider alternative ways of communicating cancer education messages to the Chinese community in Malaysia. Indeed, there may be merit in tailoring media modes to particular ethnic groups. For example, a much higher proportion of Indians than other ethnic groups listened to (Tamil) radio. Print advertisements and TV seemed to reach a similar proportion of the target population. However, viewing the TV advertisements did not affect prompted awareness about CRC signs and symptoms whereas observing or listening to printed or radio materials seemed to contribute to increased awareness. Although campaign reach to Chinese participants was low, Indians were significantly less likely to show improved CRC symptom recognition (prompted). Income and educational level groupings achieved similar awareness improvement (scores) in keeping with findings from the BCOC [12, 19].

More than half the sample thought that the BCAC TV campaign materials were relevant to them (56%), which is similar to findings from the BCOC bowel campaign (51%) [19]. Eighty-four percent of participants did not reply or answered ‘don’t know’ to the question regarding whether or not the radio materials were relevant to them. Participants who did not think that the radio campaign was relevant tended to be older (60 and above) whilst a higher proportion of Indians than other ethnic groups thought it was relevant. The poor reach to older age groups might be related to the use of unfamiliar languages e.g. English or Tamil. There were no differences between participants who viewed print advertisements as relevant vs irrelevant.

The collection of data on screening activity before and after the BCAC-CRC in a way that would have afforded a robust test of campaign impact was not possible in the circumstances. The limited screening data that we were able to collect did not indicate an increase - iFOBT and colonoscopy rates were similarly high in January and July. The results of CRC awareness raising studies in Japan, Korea and Israel (through mailed information, i.e. brochures and/or letters) were inconclusive [10] whereas findings from the more extensive BCOC media campaign indicated that the number of (2-week-wait) referrals for screening increased by 59% [23] and the Australian National Bowel Cancer Screening Programme which promoted iFOBT uptake through TV advertisements for 8 weeks reported an improvement in screening uptake during the campaign and up to 2 months after [24]. So, it appears that a multi-mode approach is needed for awareness-raising campaigns to achieve impact in relation to screening activity and clinic visits. It may not be surprising that, overall, the number of iFOBTs was higher for women whereas the number of colonoscopies was higher for men, given that CRC is more common among men. Similarly, iFOBT completion was highest among people aged 50 years and older, which is unsurprising given the higher CRC incidence in that age group and current opportunistic screening recommendations. The pattern of screening activity appeared to indicate the need to be mindful of socio-cultural contexts when designing and implementing this kind of public health intervention. For example, fewer iFOBTs and colonoscopies were undertaken during February, May and June due, in part, to the national holidays in Malaysia that occurred during these months and the observance by Muslims to avoid examination of certain bodily cavities during Ramadan’s fasting months, May – June 2018.

The fact that use of social media as part of the campaign indicated, for example, high engagement (in terms of the frequency of ‘posts’) and, at the same time, low recall of campaign posts (on Facebook) points to the difficulty of evaluating the impact of this particular intervention component. The benefits of social media have been described as widening information access and increasing information sharing and interaction [25]. However, these benefits and the diffuse and widely distributed nature of social media means that it is likely that more than the usual research techniques are required to capture its impact for public health good and cancer education at a population level. Further research is required to investigate the use and impact of social media interventions (delivered through Facebook, YouTube and other channels) in terms of delivering effective education and improving cancer awareness [26]. Regarding the helpline, there do not appear to be any studies that report the use of a helpline and its uptake as part of a cancer awareness campaign. The low number of calls to the helpline in this campaign may indicate that participants did not perceive a pressing need to call and/or preferred to visit their doctor to discuss health issues. Qualitative findings regarding the use of cancer council helplines in Australia also suggested that barriers to calling included not needing/wanting help [27]. Nevertheless, a helpline of this kind serves as an extra ‘safety net’ to capture urgent concerns from research participants.

It was not possible to create or construct a control group as part of this evaluation due to the nationwide distribution of the cancer awareness-raising intervention via TV, radio, print and social media. ‘The major strength of mass media [as a public health and cancer education intervention] - their ability to reach a wide audience, paradoxically, also presents the greatest challenge for evaluation’ [28]. In addition, it is possible that the pre-campaign assessment itself provided a form of cancer education about CRC symptoms or prompted participants to search out further information about CRC even though participants at baseline were not told about the campaign or that there would be a follow-up assessment. However, data about campaign recognition (or not) was used to adjust the analysis in a way that illuminated any extra effect due to the campaign. The self-reported nature of assessing campaign recognition is a commonly recognised limitation of evaluations of the kind presented here. It is important to be aware that the follow-up survey occurred between 1 day and 3 months post-campaign and, therefore, participants who were interviewed 1 month after the campaign ended may have had higher symptom awareness compared to participants who were interviewed 2 to 3 months post-campaign. Also, there is a possibility that some participants may have answered interview assessment questions in a self-perceived socially desirable way. We need to be mindful, too, of the composition of the study population in terms of, for example, the comparative underrepresentation of men [13] which was due, most likely, to the fact that research assistants visited households during the daytime when more women may have been at home. Chinese participants were also underrepresented whilst, as a proportion of the study population relative to the general population of Malaysia, there were around four times more Indian participants [13]. A strength of the evaluation was that most participants were recruited from low-income households, a section of the population who tend to be underrepresented in research. Finally, we were unable to provide data about screening services provided by privately run clinics; and we collected data with difficulty about the activity of government-funded clinics, which kept only limited paper-based records. This kind of data management and related research is common in LMICs and, so, it is an area that deserves attention and resources.

Arguably, the BCAC-CRC study is one of the most robust evaluations of public health efforts to improve early cancer detection in an Asian country, particularly in the form of a cancer mass media campaign, despite the limitations that we have noted above [10]. Overall, the findings of the evaluation indicate that a culturally adapted, evidence-based mass media intervention [14] appears to impact positively in terms of improving CRC symptom awareness among an Asian population; and that impact is more likely when a campaign operates a differentiated approach that matches modes of communication to the ethnic and religious diversity in a population. Therefore, further research is needed to identify which communication channels and form of tailoring are required to reach (in the example of Malaysia) the Chinese community, people without formal education and older people. The campaign that is presented here and its evaluation provides a sound design template and research platform for the implementation and spread of cancer awareness programmes in Malaysia and Asia and, so, reduce late presentation and CRC diagnosis in Malaysia and other Asian countries. Furthermore, our partnership approach to the design of the programme including the ongoing active involvement of the MoH and the NCSM increases the likelihood of effective knowledge transfer.