A review of breast cancer awareness among women in India: Cancer literate or awareness deficit?

1Breast cancer is the most common female cancer worldwide representing nearly a quarter (23%) of all cancers in women. The global burden of breast cancer is expected to cross 2 million by the year 2030, with growing proportions from developing countries. Although age-standardised incidence rates in India are lower than in the United Kingdom (UK) (25.8 versus 95 per 100,000), mortality rates are nearly as high (12.7 versus 17.1 per 100,000, respectively) as those of the UK. Breast cancer incidence rates within India display a 3–4-fold variation across the country, with the highest rates observed in the Northeast and in major metropolitan cities such as Mumbai and New Delhi. Reasons for this variation include differences in demographic (e.g., education), reproductive (e.g., age at first child and number of children), anthropometric (e.g., adiposity) and lifestyle factors (e.g., tobacco smoking and alcohol use).

2Diagnosis at advanced stages of disease contributes to the high mortality rate among women due to breast cancer, which can be attributed to low levels of awareness, cumbersome referral pathways to diagnosis, limited access to effective treatment at regional cancer centres and incomplete treatment regimens. With the rising breast cancer incidence in India and disproportionately higher mortality, it is essential to understand the level of cancer literacy, especially since the average age at diagnosis is 10 years younger than women in Western countries. An assessment of existing levels of cancer awareness is a pre-requisite for planning comprehensive health programmes, early detection and treatment campaigns, that effectively engage communities of women and men.

3Despite long-standing national programmes, such as the National Cancer Control Programme launched in 1975, under the National Programme for cardiovascular disease, diabetes, cancer and stroke (NPCDCS launched under the 12th five year Plan from 2012 to 2017), to increase awareness and early detection behaviours, the mortality rates for breast cancer continue to rank the highest in the country. Barriers such as ‘low cancer awareness’, also referred to as ‘awareness deficit’ or ‘scarcity of awareness’ among women, the presence of stigma, fear, gender inequity and reduced engagement in screening behaviours, such as breast self-examinations, contribute to high mortality rates. We conducted this review to evaluate cancer literacy in Indian women, of breast cancer risk factors, which include age, family history, age at first birth, parity, duration of breastfeeding, adiposity and alcohol use (Table 1).

4The methodology of the Cochrane Handbook for Systematic Reviews was followed through a search of several electronic databases including MEDLINE, Cochrane Database of Systematic Reviews, Cumulative Index to Nursing and Allied Health (CINAHL) and SCOPUS. Searches were restricted to research published in the English language peer-reviewed journals, as well as grey literature, till December 2014. From these publications, the bibliographic lists were also hand-searched for additional papers.

5Index terms (MeSH terms) used for the search were, ((breast neoplasms OR breast cancer OR breast health) AND (awareness OR knowledge OR attitude OR education∗ OR programme) AND (women OR female OR health worker∗ OR health professional∗) AND (risk factor∗ OR risk assessment) AND India). We also searched for qualitative studies on breast cancer using the above mentioned search terms. No qualitative study was found on breast cancer awareness among women in India. The initial search yielded 120 studies on the basis of terms in the titles and abstracts (where available) identified from the search strategy. Studies that focused on awareness of screening, or treatment modalities alone for breast cancer were excluded as we focused exclusively on the literacy levels of risk factors and causes of breast cancer. After applying the inclusion criteria, full-text articles were retrieved for 20 studies, of which 13 fulfilled the eligibility.

6We considered risk factors (Table 1) summarised in a systematic review conducted by an expert panel committee of the International Agency for Research on Cancer (IARC), the World Cancer Research Fund (WCRF) and the American Institute of Cancer Research (AICR). They classified breast cancer risk factors on the basis of the strength of existing evidence such as sufficient/convincing evidence; insufficient/weak evidence and no conclusive evidence.

7The literature search yielded 120 articles, of which 13 studies met the inclusion criteria for this study. These studies included information on 7066 women aged 15–70 years (Table 2). Of these, 10 studies were conducted among women in community settings and three among health professionals, comprising nurses and nursing students. Studies in the general population (n = 10) included adult women with a mean age ranging from 25 to 48 years. While the majority of studies were conducted in urban cities such as Ahmedabad, Mumbai, Jaipur and Chandigarh; and states such as Haryana and New Delhi, several were conducted in rural settings (e.g., Haryana and coastal villages of Karnataka), peri-urban and slum settings (e.g., Chandigarh and Medchal Mandal village in Andhra Pradesh ), as well as the metropolitan city of Mumbai The majority of studies consisted of married women, involved in household work (Table 2), with illiteracy rates ranging from 8% to 46%. Four studies reported the socio-economic (SES) of participants measured according to the Kuppuswamy socio-economic scale, which is based on monthly family income (Rao et al., 2005 – 58% lower class; Somdatta, 2008 - 34% upper lower class; Khokhar, 2009 – 58% upper middle class and Ahula et al., 2009 – 48% lower class). Literacy levels of known risk factors among women such as age, family history, number of children, age at menarche, age at menopause and age at birth of first child varied widely (Fig. 1). Awareness levels on the strongest risk factors related to age at menarche and age at menopause varied from 1% to 21% while 13–58% reported family history as a risk factor for breast cancer. Age at birth of first child and that of breast feeding were considered to be risk factors by 8–83% and 17–88% of the women, respectively. Tobacco smoking was reported to be a risk factor in 20–74% of women. There were no studies reporting literacy levels on number of children as a risk factor for breast cancer. Obesity and overweight were considered to be risk factors by 11–51%.

8Studies among health professionals comprised of nurses and nursing students (n = 3), included adult women with a mean age ranging from 28 to 40 years. All three studies were conducted in urban settings (Ahmedabad, Shimla and New Delhi), with educated women, either studying or practicing nursing (Table 2). One of the studies on nurses reported high literacy levels for risk factors such as family history (98%) and age at first child (90%) (Fig. 2). Of these studies, 52–98% of nurses and nursing students reported smoking and alcohol as risk factors. Literacy levels on family history and reproductive history were similar in nurses, but varied across study populations, ranging from 40% to 95% (Fig 2). Only one study was found to have reported 42% of literacy levels on number of children as a risk factor for breast cancer. The percent awareness of risk factors, such as age at birth of first child, age at menarche, family history, alcohol consumption and obesity was observed to have increased with each successive year for the studies conducted over the 4-year period (2008–2012), indicating a possible increase in cancer literacy in this group (Fig. 2).

9A review of the literature reveals low breast cancer literacy with regard to risk factors among Indian women, irrespective of their socio-economic and educational backgrounds, with little correlation between awareness levels and strength of evidence of the risk factors. When plotting the studies in chronological order (Fig. 1), we found no increase in the cancer literacy over time; low levels of awareness were consistently observed for important risk factors such as age at menarche, age at menopause and age at birth of first child in the general population. This may not be true for nurses/nursing students, in whom improved literacy of risk factors was observed in more recent studies. In general, we found relatively low, and wide, variation in awareness of risk factors for breast cancer among women in India over the 8-year period of publications, even as breast cancer became the most common cancer in the country. Women more commonly believed that unhealthy habits related to alcohol and tobacco consumption were more important risk factors than reproductive history, which is a much stronger determinant of breast cancer. Long-term data on fertility patterns show on average, Indian women are having fewer children (average of 3.39 live born children in 1992–1999 and 2.68 in 2005–2006) and marrying at older ages (% married by the age of 18 years has declined from 54.2% in 1992–1993 to 44.5% in 2005–2006), though it is difficult to extrapolate the impact of such changes over time in terms of excess risk due to limited data.

10Nurses were more likely to report on risk factors with less consistent evidence (Table 1), such as dietary factors, exposure to ionising radiation and tobacco consumption, when compared to risk factors such as family history and age at menarche, which are consistent, known risk factors for breast cancer. A better understanding of risk factors such as age at birth of first child and alcohol consumption over the four-year period during which these studies were conducted was observed in nurses and/or nursing students, indicating a potential increase in literacy level among health professionals. However, a short time span and small sample size precluded a time trends evaluation, and populations may not be directly comparable on important characteristics influencing literacy. Literacy deficit among health professionals is recognised as a potential barrier in breast cancer prevention and early detection, given their leading role and contribution in spreading awareness, particularly in primary care settings across the globe. Our study also reveals that health professionals’ (i.e. nurses and nursing students) awareness on the strength of risk factors for breast cancer was limited for guiding the patients towards important modifiable means of prevention.

11There is an urgent need to explore the drivers of awareness deficits and stigma surrounding breast cancer, both in the general population and among health care professionals, as incidence and mortality rates continue to rise. Understanding the drivers and barriers is important for strategic and effective awareness campaigns and/or interventions on prevention and early detection. A recent systematic review of educational interventions in improving subjective cancer risk perception in 40 studies (n = 12 randomised controlled trials (RCTs) and n = 28 prospective observational studies; n = 29/40 on breast cancer) from high income countries did not show a significant change in literacy level after educational interventions on risk perception from baseline. A separate analysis of prospective observational studies in the same systematic review however, yielded significant changes in the level of perceived risk and improved risk accuracy among cancer patients. The applicability of these results in Indian settings is uncertain. Similar reviews on educational interventions in Low Middle Income Countries (LMIC) settings are required, to understand the cultural and socio-economic context, including important factors such as stigma, for influencing awareness levels. A consensus review from the Breast Health Global Initiative (BHGI) 2010 Global Summit summarising barriers to breast cancer care, highlighted the lack of or very limited access to treatment, and limited knowledge of health professionals as major barriers to cancer prevention and detection in developing countries. Low awareness levels of risk factors are also a consequence of low informed coverage through different forms of media, including television and newspaper. In India, the media publicity and policy efforts on cancer have primarily focused on the reduction and perils of tobacco use; there has been little discussion of other important risk factors such as alcohol, reproductive history and overweight/adiposity for example.

12This review has certain limitations. These findings may not be generalised across the country as they are derived from 9 locations in northern, western, and southern geographical regions of the country. India’s heterogeneous populations with different socio-economic, cultural and social factors may yield wider variations than observed, though it is unlikely that literacy levels would be higher as this review includes major metropolitan cities such as Mumbai. The number of studies and time span are too narrow for an evaluation of significant changes in cancer literacy over time. While we emphasise the importance of literacy in this review, higher awareness levels in Indian women may not always translate to better outcomes. Some evidence suggests a noncompliant attitude of women after breast cancer screening in terms of diagnostic follow up for abnormal findings, irrespective of their socio-economic status, suggesting other factors related to fear, stigma, discrimination, denial, and distrust in the health system.

13Indian women need to be aware of both modifiable and non-modifiable risk factors for breast cancer to adopt appropriate practices for prevention. There is an urgent call for more effective nation- and state-wide cancer literacy programmes, as well as engagements with community-level organisations and the health system. With wide variations in the state-level burden, a coordinated, intensive health promotion intervention programme on risk factors, prevention, screening and management for breast cancer is prudent. Training on the latest evidence regarding breast cancer risk factors should be offered to healthcare providers and community workers to raise their cancer literacy so they can then transmit this knowledge to other sections of the society. Continuing medical education programmes with enhanced emphasis on breast cancer in the curricula of nursing at institutional level and other healthcare training institutions should be a priority for women’s health in the country.

14Not required.

15Not involved in data collection, analysis and interpretation of findings.

16Wellcome Trust Strategic Award; South Asia Network for Chronic Disease (WT 084674).

17None declared.