Promoting Awareness of Cancer and Early Detection (PACED) Initiative in Malaysia

The incidence of cancer in Malaysia and cancer-related deaths are increasing. The relatively high cancer mortality rate accounted for 10% of medically certified deaths. Age-standardized incidence rates for all cancers were 137 and 156 per 100,000 in males and females, respectively. Cancer-related may be avoided by early presentation, detection and appropriate treatment. However, cancers in Malaysia present at late stages. Research indicates clearly that there is a low level of cancer awareness in Malaysia and that low awareness delays help seeking, late presentation is high and detection rates are poor. More recently, our research group conducted a nationally representative survey of 1817 adults and found anticipated delay and several emotional barriers to seeking help. In addition, there were strong misbeliefs about cancer. For example, more than 30% did not belive that cancer could be cured and worryingly, 65% thought that most cancer treatments were worse than cancer itself.

In order to support earlier presentation and diagnosis and improve survival rates, the "Be Clear on Cancer" (BCOC) programme was launched in England in 2011 and, more recently in 2014, the "Be Cancer Aware Programme" (BeCAP) was designed and implemented by Northern Ireland's Public Health Agency. Evaluation findings reported an increased awareness about the signs and symptoms of cancer as well as increased attendance at GP practices by patients who reported key campaign-related symptoms. In addition, more people were referred urgently by GPs for suspected cancer, there was an increase in diagnostic investigation activity and there was a shift towards earlier stage disease. There is a clear need for a co-ordinated, large scale population-based cancer awareness raising programme in Malaysia. Our population-based surveys indicate that particular attention should be paid to targeting common cancer disparities among various ethnic, socio-economic and geographical groups in Malaysia. The main aim of the proposed project is to address the need to design and develop a programme or intervention that is theoretically informed, evidence-based and culturally appropriate for Malaysia and then to evaluate robustly the programme by building upon the BCOC and BeCAP programmes.

The project comprises four phases. Phase 1 - 'Development of a culturally sensitive cancer Awareness Raising Programme (CARP)' - the main aim of this phase is to develop the content of the CARP including the key messages and design and test mode(s) of delivery. The CARP will focus on the three most prevalent cancers in Malaysia - lung, breast and colorectal. Phase 2 - 'Design the evaluation framework', - a workshop will be held to discuss and finalise the evaluation framework and metrics particularly regarding the identification of the outcomes of the CARP and the assessment tools in the context of the Malaysian infrastructure and health system. The evaluation framework will be informed by the approach and methods used in the appraisal of the BeCAP and it will include a population awareness survey before-and-after the implementation of each BeCAP campaign in order to ascertain changes in awareness including recognition, attitudes, beliefs and knowledge about cancer and early diagnosis. Phase 3, 'Undertaking formative research' - qualitative and quantitative methods will be used to test the appropriateness, acceptability and feasibility of the CARP and assessment tools. Phase 4, 'Evaluate the impact of the CARP' - a large scale pilot evaluation study will be conducted in the Federal Territory of Kuala Lumpur and Selangor state. Pre-and post-campaign surveys will be carried out to evaluate the performance of campaign in term of awareness of signs and symptoms, beliefs and attitudes towards cancer and early diagnosis and attendance at primary care physicians with the symptoms highlighted in the campaign. Finally, we will develop a protocol for the roll-out of a national level CARP.

The incidence of cancer in Malaysia and cancer-related deaths are increasing. The relatively high cancer mortality rate accounted for 10% of medically certified deaths. Research indicates clearly that there is a low level of cancer awareness in Malaysia and that low awareness delays help seeking, late presentation is high and detection rates are poor. In addition, there were strong misbeliefs about cancer and several emotional barriers to seeking help.

The project comprises four phases. Phase 1 - 'Development of a culturally sensitive cancer Awareness Raising Programme (CARP)' - the main aim of this phase is to develop the content of the CARP including the key messages and design and test mode(s) of delivery. The CARP will focus on the three most prevalent cancers in Malaysia - lung, breast and colorectal. Phase 2 - 'Design the evaluation framework', - a workshop will be held to discuss and finalise the evaluation framework and metrics particularly regarding the identification of the outcomes of the CARP and the assessment tools in the context of the Malaysian infrastructure and health system. The evaluation framework will ascertain changes in awareness including recognition, attitudes, beliefs and knowledge about cancer and early diagnosis. Phase 3, 'Undertaking formative research' - qualitative and quantitative methods will be used to test the appropriateness, acceptability and feasibility of the CARP and assessment tools. Phase 4, 'Evaluate the impact of the CARP' - a large scale pilot evaluation study will be conducted in the Federal Territory of Kuala Lumpur and Selangor state. Pre-and post-campaign surveys will be carried out to evaluate the performance of campaign in term of awareness of signs and symptoms, beliefs and attitudes towards cancer and early diagnosis and attendance at primary care physicians with the symptoms highlighted in the campaign. Finally, we will develop a protocol for the roll-out of a national level CARP.

This research will have several benefits for society and the economy including impacting positively on (i) vulnerable communities in Malaysia, for example, people from low income communities and senior citizens and their families, (ii) primary care physicians, (iii) academics (iv) professional organisations and NGOs e.g. the National Cancer Society, the Health Promotion Board, "Keepable" cancer community, (v) the Malaysian Ministry of Health and (vi) other low- and middle-income countries in the ASEAN region.

The immediate beneficiaries will be local communities in Malaysia. Our project will benefit Malaysian communities by increasing public awareness about warning signs and symptoms and the value of early presentation. The cancer awareness raising programme (CARP) will attempt to reduce or eliminate emotional barriers and mis-beliefs about cancer among Malaysian communities and prompt help seeking and early diagnosis. Cancer patients and families often bear a substantial amount of the payment for health care and this burden can lead to serious economic consequences. Our project via earlier diagnosis has the potential to reduce the financial and related personal and psychosocial burden that is experienced by many cancer patients and their families.

Our project will help primary care physicians in term of improving their understanding about the community in which they serve including the felt needs, mis-beliefs and emotional barriers and cancer literacy of their patient population. The project has the potential to assist patient navigation and immediate referral of suspected cases. The study will provide novel data on the effectiveness of CARP in terms of breast cancer, colorectal cancer and lung cancer awareness and also in relation to changes in attitudes and belief about cancer and help-seeking and delaying behaviours. Findings about the nature of these relationships will be useful to public health researchers and other academics who are planning to investigate similar issues in different cancers or to informing methods and plans for future upscaling of programmes at a national level.

Professional organizations and NGOs will have confidence in the CARP because of our rigorous and robust procedures and the sound platform upon which we will build the CARP for the Malaysian population. Capacity building regarding NGOs will be enhanced and the project will provide some inspiration and a tried-and-tested way of reproducing successful health promotion programmes and materials. We will develop a protocol for a national level programme with longer-term outcomes of upscaling and implementing a pragmatic PACED initiative programme in Malaysia. The protocol will be published in an open access journal and will be widely available for academics, professionals and other interested parties. Since the Ministry of Health in Malaysia is a partner in our project from the outset, there is high potential for our protocol to be used as the basis of an evidence-based strategy for NCD prevention and control for Malaysia. The findings of our study will be disseminated to Asian countries through Asia Health Literacy Association (AHLA) and Asian Pacific Academic Consortium of Public Health (APACPH). Our proposed strategy for the implementation of the Cancer Awareness Raising Programme will serve as a blue print for cancer prevention and control policy in ASEAN where the burden of cancer is increasing and there are high cancer death rates.