Seeking to understand and improve Indonesia’s cervical cancer response
Written by Associate Professor Linda Rae Bennett, Nossal Institute for Global Health, MSPGH, UoM
Over the past decade we have seen an enormous reduction in cervical cancer incidence and survival rates in high-income countries resulting from the successful implementation of prevention via vaccination for the Human Papillomavirus (HPV is a necessary cause of cervical cancer) and early detection via screening. While high income countries such as Australia, the United Kingdom and the United States of America, that have invested in comprehensive cervical cancer responses are now experiencing low rates of incidence and very low mortality, this is in stark contrast with low- and middle-income countries that have yet to achieve an adequate response to cervical cancer.
Indonesia is one such example, where cervical cancer incidence has doubled over the last five years and where the survival rate for women diagnosed with cervical cancer remains abysmally low at 50%. In human terms, this means half of all Indonesian women diagnosed with the disease will not survive. At present GLOBCAN estimates that 50 Indonesian women lose their lives each day to cervical cancer, which amounts to around 19,000 deaths each year from a cancer that is both preventable and highly treatable if detected early.
Three years into the project, we have identified a range of common assets that have supported women in living with the disease and increased their resilience in making it through treatment. These enabling assets include: adequate income; strong family support; a mutually supportive relationship with male partners; higher formal education; access to a smart phone and regular internet connectivity; living close to a cancer treatment centre (within 2 hours travel); access to private transport; strong religious faith or support from a religious community; having a history of regular reproductive health check-ups; positive experiences with reproductive health providers earlier in life; a history of doctors who provided clear and adequate information; and support from women friends or peers who have also lived with cancer. These insights are important for reducing barriers to women accessing screening and care, for informing a more holistic approach to cancer support, and understanding what women need to successfully complete treatment once diagnosed. The findings also draw greater attention to women’s quality of life priorities in Indonesia, which have not been previously researched.
On the flip side, we have also identified a range of factors that render Indonesian women both more vulnerable to developing cervical cancer and more vulnerable after a diagnosis. These factors include: having low or no income; being divorced or widowed; having low levels of formal education; living outside of cities where cancer treatment centres are; having no or low access to transport; being socially isolated or having no family or community support; having had poor quality reproductive health care in the past; having had constrained access to free cancer screening; and having experienced stigma in a health care setting. These findings shed light on how cervical cancer as a disease is shaped by socio-cultural and economic context, and how this context needs to be understood and fed into the implementation of cancer responses to ensure their efficacy.
Project team members meeting in Yogyakarta [photo supplied by B. Spagnoletti]
From the health systems angle, we have been fortunate to interview almost 50 health professionals involved in cancer education and health promotion, HPV vaccination, cancer screening and cancer treatment. These experts, working with the Indonesian health system, have been recruited from four cancer treatment hospitals and five private clinics. Interviews with health workers have provided first hand insight into health system limitations at different levels and the multiple challenges that constrain their work. While comprehensive policy and a national implementation plan for a cervical cancer response both exist in Indonesia, and are aligned with WHO guidelines for low- and middle-income countries, the actual achievement of the stated goals at regional and district levels falls dramatically short. For instance, while the policy determines that free cervical cancer screening should be available at all primary health clinics across Indonesia’s 34 provinces, the most recent data on uptake of those services indicates that only 12% of the population of married adult women have ever been screened.
Meeting with stakeholders from the Indonesian Cancer Foundation, Yogyakarta Province Branch [photo supplied by B. Spagnoletti]
A PhD project embedded in this study, conducted by Gianna Robbers, is dedicated to exploring how both demand and supply side factors are impacting on women’s access to and uptake of screening and why screening rates remain so low. Another PhD project, conducted by Setiyani Marta Dewi, is focusing on the introduction and upscaling of an HPV vaccination program for early adolescent Indonesian girls, thus giving the larger project a multilayered perspective that covers prevention, screening and treatment of cervical cancer.
Both women affected by cancer and health professionals have identified multiple limitations related to treatment access. In terms of health infrastructure there are serious limitations with only 42 hospitals in 16 provinces registered to provide nuclear medicine for a population of 270 million. This means the radiotherapy required to treat women who have cervical cancer beyond stage 1 can be accessed at very few locations. Treatment centres are clustered in large cities in the central island of the country (Java) resulting in significant inequities in access for women living in regional and remote areas. To date we have documented multiple barriers to reaching care in large metropolitan areas – related to cost, travel and poorly functioning referral systems. The barriers associated with travel and cost have worsened since the onset of the COVID-19 pandemic.
Presenter and participants attending a cervical cancer seminar organised by the Indonesia Cancer Care Community in early 2020 in Yogyakarta, Indonesia [photo by B. Spagnoletti]
Human resources in the sub-specialist area of gynecological oncology are also inadequate, adding to waiting times for diagnosis and treatment once women do find their way to treatment centres. While Indonesia has a world class system for dual accreditation in gynecology and oncology, to become qualified in this system requires six years of undergraduate medicine, followed by a one-year internship and then four years of gynecology training, and an then an additional 4 years of oncology training (a total of 15 years of training). The pace of up-skilling specialists in this system is currently too slow, and insufficient to meet the increasing demand generated by the escalating numbers of cervical cancer diagnoses annually. To date our analysis of health system gaps shows that improvements in the speed of training of specialists could improve the capacity of treatment centres. Additionally, legal adjustments to the guidelines around nuclear medicine to include highly equipped private hospitals could also increase treatment capacity and address geographical inequalities in access to treatment.
Another human resource issue is that there are literally less than a handful of female specialists with the required dual qualifications to treat women who require radiotherapy, which our research participants describe as resulting from the dual work burden experienced by women as mothers and doctors, inhibiting their opportunities to continue their training in comparison with their male colleagues. Many studies across the world, and in Indonesia, have noted women’s preference for receiving reproductive health care from providers of the same gender, and our research has shown a growing trend in this direction associated with contemporary discourses of Islamisation in Indonesia.
A major gap identified by both women and doctors is the provision of comprehensive patient information regarding cervical cancer and its treatment regimes. With so few specialists, and such a high patient load, time for patient education is severely limited. In this context the training and introduction of specialist oncology nurses who have dedicated roles as patient educators could address this issue efficiently. Women patients participating in our research frequently requested cervical cancer related information from nurses (who are overwhelming female). However, nurses are at present directed not to answer any questions related to the biomedical aspects of women’s disease and are not trained as patient educators. Strengthening the capacities of nurses in Indonesian oncology wards has the potential for significant improvements in women’s access to information and support, and for potentially reducing treatment drop-out associated with patients’ feeling unsupported and under-informed.
This project has also documented how the stigma associated with cervical cancer in Indonesia deters women from participating in screening and presenting for diagnosis and care. We have systematically collected women’s narratives about how they have experienced stigma at the community level, via health promotion messaging, and within the health system. Our data highlights that stigma has multiple impacts on women diagnosed with cervical cancer including: blaming women for their disease; constructing them as sexually permissive or as unfaithful wives; and causing social isolation and lack of support due to women deciding not to disclose their cancer diagnosis to family or other close contacts because of the associated stigma. An intended outcome of this research will be the production of information materials on cervical cancer that counter common stigmatising myths about the disease and that are designed specifically to avoid laying blame for the disease on women. The unique combination of ethnographic methods and health system analysis implemented in this program of research enhances the translational utility of the data, which we hope will inform a more comprehensive response to cervical cancer in Indonesia, and a subsequent reduction in the unnecessary loss of lives from this disease.
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