Despite public-private initiatives to increase preventive screening for cancer through mobile camps, mortality rates on account of the disease continue to be high. In this post, Ghosh and Sekar discuss the trade-off between providing free screening to large numbers of people, and follow-up efforts to encourage long-term care-seeking behaviour – with a focus on women’s screening and the particular barriers it involves.
India is experiencing an increase in the incidence of cancer, with estimated numbers being 548,000 in 1990 and 1,069,000 in 2016 (Smith et al. 2019). For women, much of the cancer-related mortality is on account of breast and cervical cancer (Dhillon et al. 2018). This is generally due to poorer prognosis, because of relatively low cancer awareness, inadequate early detection mechanisms, and the lack of equitable access to affordable curative care compounded by gender disparity. For instance, the five-year survival rate for breast cancer in India is about 52%, while the corresponding figure for high-income countries hovers around 80-90% (Rivera-Franco et al. 2018). Low survival rates indicate that this type of cancer is being diagnosed in a ‘reactive’ manner implying that a large proportion of women are being diagnosed at later stages, when treatments are not as effective (Rajpal et al. 2018). Counteracting this requires a gendered approach to detect the disease earlier and improve survival rates.
Free cancer screening and its unintended consequences
The National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular Diseases and Stroke (NPCDCS) – an initiative by the Government of India – has put forth broad cancer screening guidelines to specify frequency and target demographics for screening. Using these guidelines, many health centres consistently provide cancer screening, but it often comes at the cost of accessibility. To reduce the barrier of accessibility, ‘mobile detection units’ have been created in part by the government, but mostly by non-governmental organisations (NGOs). These are neighbourhood-based camps and diagnostic vans that provide free screening to address time and financial resource constraints. Staffed by a mix of paid and voluntary healthcare professionals, mobile units commonly screen for a wide variety of cancers including stomach, lung, oral, breast, and cervical cancer, utilising tools such as x-rays, mammograms, and pap smears.
Screening camps employ a wide range of participant recruitment techniques with varying rates of success. These camps manage to attract women at a disproportionately lower level which is why some spend weeks organising their screening site to include more women, while others continue to do same-day recruitment. Some use their own volunteers to encourage women to attend the camp, while others leave mobilisation to community members or frontline health workers such as Accredited Social Health Activists (ASHAs), Auxiliary Nurse Midwifes (ANMs), or Anganwadi (childcare centre) workers. In general, it is seen that successful mobilisation taps into existing relationships within neighbourhoods, workplaces, and religious institutions like gurdwaras, temples, and mosques.
The increased accessibility comes at the reciprocal cost of inconsistency that creates uncertainties on follow-ups. Governed by external grants and funding sources, the camps are limited in the geographical area they serve, and provide infrequent large-scale screenings of 100-150 people a day. A few days after the camp, attendees receive their results. If anything suspicious is found, they are encouraged to come to the affiliated centres for further diagnostic testing. Camp coordinators persistently follow up with the attendees, but oftentimes attendees are unreachable or unable to get to the testing centres to continue with the subsequent process. While mobile camps are successful in screening a large number of attendees in a short period of time, the unintended consequences of this approach materialise only after positive detection of abnormalities. In the case of positive detections, it is especially difficult to convince women to seek follow-up care. After women receive a positive diagnosis, around a quarter of them drop out of the care process (Kulkarni et al. 2019). Non-communicable disease (NCD) care is a cyclical process, meaning that in order to be successful, it requires patients to be continually engaged throughout the multiple cycles of screening, detection, diagnosis, treatment, and remission follow-up. Screening that provides a one-time barrier mitigation and does not fully address those barriers in the following stages of treatment, has difficulty coexisting with diseases that require prolonged care-seeking behaviour.
Unlike diabetes or other NCDs, cancer treatment carries a stigma of being a disease with little return on investment due to low survival rates. It is challenging to persuade women to invest time and money, and transgress social norms to seek costly care. Women’s internalisation of the role of a nurturer often perpetuates a family structure where they have little bargaining power. This reinforces barriers to preventive care and results in delaying care. Care-averseness is strengthened by notions that utilising care, especially ‘when not needed’, is selfish and antithetical to society’s expected ideals. Further, giving women a diagnosis of cancer without the support to navigate the system, is detrimental. Without access to treatment, they are left to grapple not only with the mental stress, but also the burden of stigma and exclusion that comes with the diagnosis.
The theoretical goal of early detection programmes is to identify people with positive diagnoses, and ensure they obtain early care to improve their chances of survival. However, the current model may not be the most effective way to achieve that goal. When resources like time, money, and staff are limited, the question of how to screen and treat the largest possible number of attendees, becomes essential. In order to reduce the burden of cancer, we must consider the trade-off between the screening of large numbers of attendees and the promotion of long-term care-seeking behaviour.
Addressing barriers in women’s ability to access cancer screening
Owing to lifestyle and environmental changes, cancer burden in India is projected to increase alongside the development of the country (Mathew et al. 2019). In order to shift cancer care-seeking behavior to a preventive health approach, recipients of care need to play an active role in detection and treatment of their condition. When there are no legitimising outward symptoms of illness, women in low-resource settings have difficulty utilising scarce family resources for their own health. The inability to access care is tied to social, historical, and socioeconomic pressures, and so the solutions must also reflect the recognition of these barriers. What follows is an exploration of potential solutions to minimise this trade-off:
Identifying key populations to screen and developing appropriate population-based screening protocols
In the camp setting, a lack of privacy and insufficient time spent on each patient hinders obtaining an accurate personal and family health history. Generally, risk factors and potential hereditary components are major inclusion criteria in cancer screening guidelines. However, guidelines created at the country level include a heterogenous population and geography that limits their utility in divergent settings. For example, mammography is an expensive component of mobile screening, so the question of who should get a mammogram is paramount (Gutnik et al. 2015). Delineating the target population will also require understanding cancer prevalence in the Indian context. Indian women have a higher incidence of a specific subtype of breast cancer; hence, understanding risk factors and age ranges specific to the subtype can help better target screening (Thakur et al. 2018). Since there are economies of scale in mammograms, another potential strategy to improve cost-effectiveness is to spend more resources recruiting women prior to screening and ensuring a minimum number of mammograms are performed during each camp (Schweitzer et al. 1998). There is a need to evaluate the most cost-effective way to screen cancer in a mobile screening setting. This will ensure allocation of resources to interventions with a higher likelihood of detecting the disease.
In addition to targeting key population groups based on cancer type, it may be useful to assess the socio-demographic context of the camp. For example, in low-resource neighbourhoods, it may be better to increase access to information and involvement of community health workers, rather than holding cancer screening camps without sufficient follow-up. In high-resource settings, it is plausible that women are deterred from screening by the pressure to maintain social standing and logistical barriers like the perceived lack of time for personal healthcare, but would have more resources to follow up with care after the initial screening. In these cases, a mobile camp could employ a cost-effective population-based screening tool and subsequently delineate cancer care pathways.
Integrate community workers into screening
ASHAs, ANMs, Anganwadi workers, and women’s self-help groups in rural communities are critical players in promoting maternal and child health. With the demographic and epidemiological transition, India’s population growth is accompanied by a shifting disease profile from communicable diseases to NCDs. One step to curb these increasing rates of cancer among women is to integrate NCDs into the community health worker repertoire. Some NGOs and governmental organisations are already doing this informally with reported success. Formally building the capacity of community health workers to aid these efforts could create a stronger link between the transient screening camps and the communities they operate within. Establishing better accountability mechanisms could mitigate the problem of a lack of follow-up. However, this suggestion should be cautiously approached, because these workers are already overworked and underpaid, often resulting in variable levels of efficacy.
Setting up a more rigorous process of recruiting attendees for screening camps
As stated in the previous recommendation, the camps should focus more on mobilisation and establish a two-way commitment early on. Often, people only learn about the camps when they are happening. While this allows for more unplanned attendance, it does not always translate into follow-up. Organisations in charge of camps should start mobilising the community well in advance. Partnering with authority figures in the community could increase the likelihood of attendance, but might result in disproportionate access owing to the network effect in neighbourhoods. Additionally, attendees should be informed in advance about screening procedures, particularly for sensitive exams. Receiving an invasive screen without prior knowledge results in mistrust, and deters women from engaging in follow-up care. These barriers could be addressed during mobilisation, by engaging people who have been screened and successfully treated, as positive role models.
Creation of a broader network for cancer screening
While organisations conducting free-of-cost opportunistic screenings have a baseline awareness of one other’s existence, they often do not recognise their overlapping goals. By creating a formal network and pooling resources, they could encourage attendees to seek follow-up care by increasing access. Giving attendees more options and access could increase uptake of care. This network could also expand to include other stakeholders such as religious leaders and primary care doctors who would be crucial in mobilising and treating people. Such a network could also facilitate inter-organisational communication, leading to an increase in the diversity of communities hosting cancer screening camps.
The increase of late-stage cancer diagnosis among females should pique the nation’s attention. These women, apart from having intrinsic value as Indian citizens, also play important roles in the workplace and the household. Governmental and non-governmental agencies need to invest in their long-term health, and ensure they have access to the full continuum of cancer care. The strategy to address India’s escalating cancer rates must reflect the heterogeneity innate in its fabric.
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