Improving early detection and diagnosis of breast cancer among multi-ethnic rural communities in Malaysia - implementation of the CENP

Breast cancer (BC) is the commonest cancer in Malaysia. Women in rural areas present with advanced cancer and experience poor survival due to low awareness about symptoms and low participation in BC screening. This project aims to harness the lessons from our previous successful study in Malaysia and the methods of implementation science to develop and evaluate a community education and navigation programme (CENP) that will improve the early detection and diagnosis of BC among rural women. The study will be conducted in Segamat district, Johor State in consultation with local stakeholders and with the support of the South East Asia Community Observatory (SEACO), an established Health & Demographic Surveillance Site. The immediate beneficiaries will be women and families in local rural communities in Malaysia. Our project will benefit rural communities by increasing public awareness about warning signs and symptoms and, more specifically, by navigating women to breast cancer screening. The CENP will identify and counter emotional barriers, dispel misbeliefs and prompt help-seeking behaviour thereby enhancing cancer prevention and leading, where appropriate, to early diagnosis and
treatment. Our project via improved prevention and earlier diagnosis will reduce the burden including the personal, financial and psychosocial burden that is experienced by many women and their families as well as the resource burden to the health care system and the wider societal economic consequences for Malaysia. In addition, our project will collaborate with primary care physicians in order to improve their understanding further about the community in which they serve, embed patient navigation in community and primary care services and expedite referral of suspected cases. Furthermore, the project will capacity build' to the benefit of rural communities, NGOs, public health researchers and academics by enhancing knowledge and educational materials and related skills regarding cancer.

Phase 1 will involve conducting an evidence synthesis of studies about community navigation programmes. The views of community advocates and stakeholder groups will be elicited via focus groups with women from different socioeconomic backgrounds and ethnic groups in rural areas of Segamat and individual interviews with key informants. Phase 2 will involve co-designing a culturally sensitive CENP, the selection of navigators and the development of training modules and health education materials. Phase 3 will test the appropriateness and acceptability of the new programme via FGs. Phase 4 will conduct a comparative evaluation in Segamat district which has 11 sub-districts, 5 of which provide data for the SEACO platform. The 5 sub-districts are approximately similar in terms of socio-demographic profile and health service profile. One intervention sub-district and two comparator sub-districts will be chosen randomly from the 5 rural sub-districts. SEACO completes an annual enumeration and multiple population-wide health surveys in these sub-districts. A sample of 466 at the 'intervention sub-district' and 466 at each 'comparator sub-district' will be drawn randomly from SEACO data to participate in the evaluation. A sample size of 1400 will allow 80% power to detect, as statistically significant at the 5% level, an increase of 8% or more in the proportion
aware of a breast cancer symptom in the CENP site compared with comparator sites after the intervention (based upon baseline awareness of a breast lump as a cancer symptom of 65% from our previous Newton-funded study). The sample size of 1400 will also allow 80% power to detect an absolute increase in the proportion of women who visit a doctor in the 6 months following CENP of 8% in the CENP site compared with comparator sites. Phase 5 activities will involve dissemination and writing joined-up policy and practice briefs for the Ministry of Rural Development and the Ministry of Health.