In Tanzania, breast cancer is the second leading cancer in both incidence and mortality among women, with an estimation of 3037 new cases and 1303 deaths in 2018, and is expected to increase to more than 120% for both incidence and mortality by the year 2040(1, 18). As a country, Tanzania is relatively new to adopt cancer control programs and invest in community cancer services(2). This study illustrates the need to factor in women’s perspectives when considering cancer control programs and the strength in conducting knowledge assessments. We did this survey in order to influence future breast cancer control efforts in the lake zone catchment area. In our study, women did not know common risk factors for developing breast cancer such as family history and being older. However, the majority of women did understand that early detection is important to surviving breast cancer, that it is possible to treat breast cancer, and that treatment is available to them in Mwanza. While it is positive that women know breast cancer is treatable, less than one sixth of women indicated they knew any signs or symptoms of breast cancer at all and yet nearly all women would be likely to seek care only if their symptoms were severe. They also indicated numerous barriers they face when care-seeking which is concerning as the National Breast Cancer Control strategy hinges on women recognizing symptoms early and presenting at a health center to obtain a clinical breast examination (CBE) for their breast concern(19). Other findings had a more positive outlook as over half of women said they would first seek care for breast concerns at a hospital, as compared to a traditional healer, and that they would like to know more about breast cancer. The results of this study demonstrate a clear need for continuing assessments of women’s knowledge and perspectives and offers a starting point for breast cancer educational campaigns to accompany clinical programs for early detection.
Not surprisingly, community women do not have a comprehensive understanding of breast cancer. The majority of women indicated that they had heard of breast cancer and could identify at least breast or armpit lumps as symptoms but very few women had received any breast cancer education previously. This is not uncommon in East Africa, with surveys in coastal and Western Kenya reporting similar results(20, 21). In another Tanzanian study based in Dar es Salaam, 70.2% of women looking for outpatient care at the district hospital recognized breast lump successfully(22). In a survey among 230 Nigerian women, only 50% of the women noted a painless lump as the breast cancer symptom(23). Similarly, in a large survey assessing the perceptions of breast cancer among non-healthcare personnel in Kenya only around 12% recognized breast lump as a symptom and less than 2% recognized breast rash, and changes in the nipple as signs and symptoms(20). This is also true of risk factor knowledge. Of the women surveyed, very few agreed that being older or having a close relative with breast cancer can increase the chance of getting breast cancer. In a study from Western Kenya, 52.5% of those surveyed did not know any breast cancer risk factors and only 12.3% mentioned heredity(20). Comparatively, in the study of Nigerian women, around 45% and 33% thought family history and old age were breast cancer risk factors, respectively(23). For cancer control programs to be successful at detecting breast cancer early, especially programs that rely on women taking the initiative to seek care, community women must possess the bare minimum knowledge of breast cancer signs, symptoms and risk factors.
General barriers to care seeking specifically for a breast concern were overwhelming. Of each presented barrier, fear of losing their breast was the common response. This sentiment is likely reflective of the current method of treatment, as surgery is generally the first and most common procedure, and breast-conserving/breast-sparing options are nascent in many LMIC settings(1, 24). Similar research has explored the idea of prioritizing responsibility for other family members needs over the woman’s own(25, 26) and this is also reflective in our research as majority of women were worried about what might be found in a medical exam and only present when their symptoms are severe and presumably interfere with everyday life. Studies have acknowledged that low awareness of breast cancer symptoms may prevent women from noticing, and even misinterpret or ignore these symptoms, which contribute to the delay of women’s presentation in the hospital and subsequent diagnosis(20, 27). For example, when women had detected lumps, they may still wait until the appearance of other symptoms, such as pain, before turning to medical help(20). Additionally, when considering women with only non-lump symptoms, studies have shown an even greater delay in seeking care compared to those women who present with lump only or lump plus additional symptoms. Arranging transportation was also a commonly reported barrier to care seeking, which was also reflected in the low reported ownership of transportation methods and has been shown to be an issue for accessing care LMICs(28, 29). However, almost all women in our study indicated that they would be motivated to seek care if their symptoms were severe. This is worrisome that severity of symptoms is a motivator since it is the opposite of cancer controls “early detection” goal. Late presentation, diagnosis, and treatment have been serious challenges for breast cancer control in many other LMICs, but elevated breast cancer awareness has shown to be associated with higher breast self-examination practice frequency, screening participation, earlier presentation, and better follow-up to referral and treatment(8, 15, 25, 26, 30-33).
Looking at overall knowledge, women do not believe they know a lot about breast cancer and did not demonstrate high health awareness of breast cancer. Groups that typically knew less about breast cancer were from rural areas, tended to be younger and identified their occupation as ‘peasant’. Our study revealed that previous health related education or university level education, were both factors for high built knowledge scores. However, the level of education received did not affect women’s breast cancer awareness significantly. This finding was consistent with a study in China(34), but deviates from other studies in Nigeria(35), Pakistan(36), and Saudi Arabia(37), which reported a potentially positive relationship between education level and breast cancer awareness. Several retrospective studies have shown the importance of breast health awareness and early presentation as they positively impact survival(38-40). When developing health education programs it is important to target groups that both need education and can share and disseminate knowledge to peers and other community members(41, 42). Religious outreach campaigns can utilize the community aspect of religion to target and recruit participants(43). In addition, several studies have acknowledged the impact of religion on breast cancer control, and suggest incorporating a component of religion when developing health education programs(44, 45). Educational campaigns at schools similarly can easily recruit participants and the knowledge learned while young will follow a woman through her life arming her with the necessary tools to recognize suspicious symptoms and seek care sooner(46).
Moving forward, this initial study gives clear guidance on where basic gaps exist regarding community knowledge and barriers to care. Strengths of this study include the large sample size and distribution of women all over Mwanza. Our population was also not limited to women already in a healthcare setting. We sampled women from public areas where people congregate, and this made our study population more representative of the general population and our results generalizable for the lake region. However, our use of convenience sampling had limitations, including a large sample of 30-39 year old women while only capturing the perspectives of few women over the age of 60. In Tanzania, this age category accounts for about 5% of the total population whereas they only comprised 3.4% of our study sample.(47) Finally, the KAP survey was based on a well validated and widely used instrument to assess breast cancer awareness, ensuring comparability with other studies, although, adaptations were needed to best fit the Tanzanian study context. As this is a good initial assessment of knowledge and practices, further assessments into care seeking and beliefs are necessary to explore the topics of care seeking motivations and barriers further. In-depth qualitative assessments would allow us to better characterize true barriers to knowledge and care-seeking and develop targeted, evidence-informed interventions.