Listening to Patient and Caregiver Voices to Anchor Global Cancer Control.

The experiences of those living with illness and those who care for them are central to disease control and prevention efforts. The history of public health is full of reminders of when consultations with patients and families helped develop meaningful interventions that were ultimately adopted by communities. Global cancer control, on the other hand, seems to increasingly take place in tertiary hospitals and centers where care is sought often at a late stage of cancer. This essay draws on personal experiences of the authors in working with cancer survivors in southern India and discusses how listening to patient and caregiver voices might guide global cancer control efforts.

Building Capacity for Global Cancer Research: Existing Opportunities and Future Directions.

Cancer incidence and mortality are increasing in low- and middle-income countries (LMICs), where more than 75% of global cancer burden will occur by the year 2040. The primary drivers of cancer morbidity and mortality in LMICs are environmental and behavioral risk factors, inadequate prevention and early detection services, presence of comorbidities, and poor access to treatment and palliation. These same drivers also contribute to marked cancer health disparities in high-income countries. Studying cancer in LMICs provides opportunities to better understand and address these drivers to benefit populations worldwide, and reflecting this, global oncology as an academic discipline has grown substantially in recent years. However, sustaining this growth requires a uniquely trained workforce with the skills to pursue relevant, rigorous, and equitable global oncology research. Despite this need, dedicated global cancer research training programs remain somewhat nascent and uncoordinated. In this paper, we discuss efforts to address these gaps in global cancer research training at the US National Institutes of Health.

Follow-Up Care for Breast and Colorectal Cancer Across the Globe: Survey Findings From 27 Countries.

PURPOSE: The purpose of this study was to describe follow-up care for breast and colorectal cancer survivors in countries with varying levels of resources and highlight challenges regarding posttreatment survivorship care. METHODS: We surveyed one key stakeholder from each of 27 countries with expertise in survivorship care on questions including the components/structure of follow-up care, delivery of treatment summaries and survivorship care plans, and involvement of primary care in survivorship. Descriptive analyses were performed to characterize results across countries and variations between the WHO income categories (low, middle, high). We also performed a qualitative content analysis of narratives related to survivorship care challenges to identify major themes. RESULTS: Seven low- or /lower-middle-income countries (LIC/LMIC), seven upper-middle-income countries (UMIC), and 13 high-income countries (HICs) were included in this study. Results indicate that 44.4% of countries with a National Cancer Control Plan currently address survivorship care. Additional findings indicate that HICs use guidelines more often than those in LICs/LMICs and UMICs. There was great variation among countries regardless of income level. Common challenges include issues with workforce, communication and care coordination, distance/transportation issues, psychosocial support, and lack of focus on follow-up care. CONCLUSION: This information can guide researchers, providers, and policy makers in efforts to improve the quality of survivorship care on a national and global basis. As the number of cancer survivors increases globally, countries will need to prioritize their long-term needs. Future efforts should focus on efforts to bridge oncology and primary care, building international partnerships, and implementation of guidelines.

India-United States Dialogue on Traditional Medicine: Toward Collaborative Research and Generation of an Evidence Base.

Therapies originating from traditional medical systems are widely used by patients in both India and the United States. The first India-US Workshop on Traditional Medicine was held in New Delhi, India, on March 3 and 4, 2016, as a collaboration between the Ministry of Ayurveda, Yoga and Naturopathy, Unani, Siddha, and Homoeopathy (AYUSH) of the Government of India, the US National Cancer Institute (NCI), National Institutes of Health, and the Office of Global Affairs, US Department of Health and Human Services. It was attended by Indian and US policymakers, scientists, academics, and medical practitioners from various disciplines. The workshop provided an opportunity to open a dialogue between AYUSH and NCI to identify promising research results and potential topics for Indo-US collaboration. Recommendations that emerged from the workshop underlined the importance of applying rational and scientific approaches for drug development; standardizing traditional medicine products and procedures to ensure reliability and reproducibility; promotion of collaboration between Indian traditional medicine practitioners and researchers and US researchers; greater integration of evidence-based traditional medicine practices with mainstream medical practices in India; and development of training programs between AYUSH and NCI to facilitate crosstraining. Several positive developments took place after the thought-provoking deliberations.

Population-based cancer screening programmes in low-income and middle-income countries: regional consultation of the International Cancer Screening Network in India.

The reductions in cancer morbidity and mortality afforded by population-based cancer screening programmes have led many low-income and middle-income countries to consider the implementation of national screening programmes in the public sector. Screening at the population level, when planned and organised, can greatly benefit the population, whilst disorganised screening can increase costs and reduce benefits. The International Cancer Screening Network (ICSN) was created to share lessons, experience, and evidence regarding cancer screening in countries with organised screening programmes. Organised screening programmes provide screening to an identifiable target population and use multidisciplinary delivery teams, coordinated clinical oversight committees, and regular review by a multidisciplinary evaluation board to maximise benefit to the target population. In this Series paper, we report outcomes of the first regional consultation of the ICSN held in Agartala, India (Sept 5-7, 2016), which included discussions from cancer screening programmes from Denmark, the Netherlands, USA, and Bangladesh. We outline six essential elements of population-based cancer screening programmes, and share recommendations from the meeting that policy makers might want to consider before implementation.

First International Workshopson Provocative Questions (PQ) in Cancer Research, October-November 2014, New Delhi, Bengaluru, and Thiruvananthapuram, India.

In 2011, the National Cancer Institute (NCI, USA) introduced the Provocative Questions (PQ) Initiative, a new approach allowing active researchers to define major unsolved or neglected problems in oncology unaddressed by existing funding. Last year, the U.S. NCI teamed up with the Indian Department of Biotechnology (DBT) to pilot the PQ approach in three cities in India. Workshop outcomes includedthe generation of fundable "PQs" (perplexing questions understudied by the international scientific community), as well as the identification of several non-PQ projects and research-related issues of importance to DBT and other Indian funding groups. The workshops clearly indicated the need to expand beyond crafting "PQs" when considering the best areas for research funding in international settings. Nonetheless, the first set of PQ workshops provided a forum to discuss key issues regarding cancer research in India, including the paucity of cancer research funding, and the lack of relevant human resource training and technology sharing platforms. Continued open debate between researchers, funders and policymakers will be essential to effectively strengthen the cancer research portfolio in India.

Recommendations for screening and early detection of common cancers in India.

Cancers of the breast, uterine cervix, and lip or oral cavity are three of the most common malignancies in India. Together, they account for about 34% of more than 1 million individuals diagnosed with cancer in India each year. At each of these cancer sites, tumours are detectable at early stages when they are most likely to be cured with standard treatment protocols. Recognising the key role that effective early detection and screening programmes could have in reducing the cancer burden, the Indian Institute for Cytology and Preventive Oncology, in collaboration with the US National Cancer Institute Center for Global Health, held a workshop to summarise feasible options and relevant evidence for screening and early detection of common cancers in India. The evidence-based recommendations provided in this Review are intended to act as a guide for policy makers, clinicians, and public health practitioners who are developing and implementing strategies in cancer control for the three most common cancers in India.

Using implementation science to advance cancer prevention in India.

Oral, cervical and breast cancers, which are either preventable and/or amenable to early detection and treatment, are the leading causes of cancer-related morbidity and mortality in India. In this paper, we describe implementation science research priorities to catalyze the prevention and control of these cancers in India. Research priorities were organized using a framework based on the implementation science literature and the World Health Organization's definition of health systems. They addressed both community-level as well as health systems-level issues. Community-level or "pull" priorities included the need to identify effective strategies to raise public awareness and understanding of cancer prevention, monitor knowledge levels, and address fear and stigma. Health systems-level or "push" and "infrastructure" priorities included dissemination of evidence- based practices, testing of point-of-care technologies for screening and diagnosis, identification of appropriate service delivery and financing models, and assessment of strategies to enhance the health workforce. Given the extent of available evidence, it is critical that cancer prevention and treatment efforts in India are accelerated. Implementation science research can generate critical insights and evidence to inform this acceleration.

Implementation science in cancer prevention and control: a framework for research and programs in low- and middle-income countries.

Implementation science is a set of tools, principles, and methodologies that can be used to bring scientific evidence into action, improve health care quality and delivery, and improve public health. As the burden of cancer increases in low- and middle-income countries, it is important to plan cancer control programs that are both evidence based and delivered in ways that are feasible, cost-effective, contextually appropriate, and sustainable. This review presents a framework for using implementation science for cancer control planning and implementation and discusses potential areas of focus for research and programs in low- and middle-income countries interested in integrating research into practice and policy.

Measurement of self, experienced, and perceived HIV/AIDS stigma using parallel scales in Chennai, India.

HIV/AIDS stigma can severely compromise the quality of life of people living with HIV/AIDS (PLHA) by reducing access and quality of care, adherence to therapy, and disclosure of HIV status, thereby potentially increasing transmission. The objective of this study was to develop and psychometrically test three parallel scales measuring self, experienced, and perceived stigma among PLHA (n=188) in Chennai, India. Exploratory factor analysis (EFA), which was used to facilitate item reduction and assess construct validity, confirmed the presence of three underlying theoretical domains. The final number of items and Cronbach's Alpha for each scale were: 8 items, Alpha of 0.84, for self stigma; 7 items, Alpha of 0.86, for experienced stigma; and 7 items, Alpha of 0.83, for perceived stigma. External validity was ascertained by confirming a significant positive association between the measure of each type of stigma and depression (measured using CES-D), using structural equation modeling (SEM). Therefore, scales were parsimonious, reliable, and were found to be valid measures of HIV/AIDS stigma. Using these validated scales, researchers can accurately collect data to inform the design of stigma reduction programs and interventions and enable subsequent evaluation of their effectiveness.

High prevalence of forced sex among non-brothel based, wine shop centered sex workers in Chennai, India.

Sexual violence has been shown to increase women's risk of HIV infection. India is a country where the HIV epidemic is growing among women and intimate partner violence (IPV) is pervasive. This study examined prevalence of and factors associated with forced sex among female sex workers (FSWs) in Chennai, India. We conducted a probability survey among FSWs in 24 slum venues and identified predictive factors for recent forced sex using univariate and multivariable proportional odds models. Among 522 FSWs, 28% reported having forced sex with one partner and 35% with 2+ partners. In the final multivariable model, women who had a high number of partners who had a strong tendency to drink alcohol before sex were more likely to have experienced forced sex, and women who had both unprotected sex with a nonspousal partner and > 20 days of alcohol consumption in the last 30 days were more likely to have experienced forced sex. Discussion about family violence with larger social networks was independently associated with lower odds of forced sex among FSWs. HIV interventions for FSWs and their clients aimed at reducing alcohol consumption and encouraging condom use could be enhanced by violence prevention interventions to facilitate discourse about sexual violence.

Factors associated with the perpetration of sexual violence among wine-shop patrons in Chennai, India.

With an estimated 2.5 million people living with HIV/AIDS, India has the third highest number of HIV-infected people in the world. Despite reductions in prevalence among the general population, the percentage of all infections occurring among Indian women is continuing to rise. Women's risk of HIV infection from their partner and observed associations between sexual violence and HIV infection in India underscore the importance of understanding determinants of forced sex. A probability survey was conducted from June 2003 to August 2007 in Chennai, India, among alcohol venue ("wine shops") patrons to estimate the prevalence of sexual violence and to identify risk factors associated with perpetrating forced sex. Among 1499 men, 28.5% reported forced sex with at least one partner in the past 3 months. In multivariate analysis, earning income for less than 12 months a year, visiting the wine shop with friends, STD symptoms, perpetration of physical violence, and number of sexual partners were statistically significantly associated with perpetrating forced sex. Men who reported having 3 or more close friends were less likely to perpetrate violence. HIV interventions that facilitate formal groups that foster positive social support and address a range of HIV risk behaviors including sexually and physically abusive behaviors are recommended to reduce sexual violence.

A descriptive profile of abused female sex workers in India.

This descriptive study presents the profiles of abused female sex workers (FSWs) in Chennai, India. Of 100 abused FSWs surveyed using a structured questionnaire, severe forms of violence by intimate partners were reported by most (98%) respondents. Of the total sample, 76% experienced violence by clients. Sexual coercion experiences of the FSWs included verbal threats (77%) and physical force (87%) by intimate partners and forced unwanted sexual acts (73%) by clients. While 39% of the women consumed alcohol before meeting a client, 26% reported that their drunkenness was a trigger for violence by clients. The findings suggest that there is an urgent need to integrate services, along with public-health interventions among FSWs to protect them from violence. Recognition of multiple identities of women in the contexts of intimate relationships versus sex work is vital in helping women to stay safe from adverse effects on health.

Associations between social capital and HIV stigma in Chennai, India: considerations for prevention intervention design.

Stigma against persons living with HIV/AIDS (PLHA) is a barrier to seeking prevention education, HIV testing, and care. Social capital has been reported as an important factor influencing HIV prevention and social support upon infection. In the study, we explored the associations between social capital and stigma among men and women who are patrons of wine shops or community-based alcohol outlets in Chennai. We found that reports of social capital indicators were associated with reduced fear of transmission of HIV/AIDS, lower levels of feelings of shame, blame and judgment, lower levels of personal support and perceived community support for discriminatory actions against PLHA. Specifically, when participants reported membership in formal groups, perception of high levels of collective action toward community goals, high norms of reciprocity between neighbors and residents in daily life, and presence of trusted sexually transmitted disease care providers, all levels of measures of stigma were lower. Although we defined social capital rather narrowly in this study, our findings suggest that seeking partnerships with existing organizations and involving health care providers in future interventions may be explored as a strategy in community-based prevention interventions.

Reasons for seeking HIV-test: evidence from a private hospital in rural Andhra Pradesh, India.

This study sought to describe the development of HIV counselling and testing services in a rural private hospital and to explore the factors associated with reasons for seeking HIV testing and sexual behaviours among adults seeking testing in the rural hospital. Data for this study were drawn from a voluntary counselling and testing clinic in a private hospital in rural Andhra Pradesh state in southern India. In total, 5,601 rural residents sought HIV counselling and testing and took part in a behavioural risk-assessment survey during October 2003-June 2005. The prevalence of HIV was 1.1%. Among the two reported reasons for test-seeking--based on past sexual behaviour and based on being sick at the time of testing--men, individuals reporting risk behaviours, such as those having multiple pre- and postmarital sexual partners, individuals whose recent partner was a sex worker, and those who reported using alcohol before sex, were more likely to seek testing based on their past sexual behaviour. Men also were more likely to seek testing because they were sick. The findings from this large sample in rural India suggest that providing HIV-prevention and care services as part of an ongoing system of healthcare-delivery may benefit rural residents who otherwise may not have access to these services. The implications of involving the private sector in HIV-related service-delivery and in conducting research in rural areas are discussed. It is argued that services that are gaining prominence in urban areas, such as addressing male heterosexual behaviours and assessing the role of alcohol-use, are equally relevant areas of intervention in rural India.