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.

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.

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.

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.

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.

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.

HIV/AIDS stigma: reliability and validity of a new measurement instrument in Chennai, India.

HIV/AIDS stigma is a frequently cited barrier to HIV prevention, including voluntary counseling and testing. A reliable and valid measurement instrument is critical to empirically assess the extent and effects of HIV/AIDS stigma. The paper reports the development and psychometric testing of an HIV/AIDS stigma scale among 200 men in India. The resulting 24-item scale and the four subscales had good internal consistency (Cronbach's alpha overall was 0.81; subscales were 0.86, 0.73, 0.72 and 0.76, respectively). The scale and distinct subscales suggest a valid and reliable measure for HIV/AIDS stigma in a setting with highly prevalent HIV risk behaviors.

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.

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.

An approach to addressing ethical issues in a community-based risk assessment for HIV: a case from Chennai, India.

Community-based assessment of HIV prevalence and behavioural risk factors is the basis for deciding priorities of prevention and care programmes. Here, upholding the human rights of participants in assessment is of utmost importance. The objective of the paper was to describe the process of implementation of an epidemiological survey to assess HIV-related behavioural and biological factors in Chennai city in South India and to suggest an ethical framework for conducting similar assessment activities in developing-country settings. A survey was conducted with participation from residents (n=1,659) of low-income urban communities (slums) as part of a community-based HIV/STD-prevention trial. Administration of the survey was preceded by extensive community contact and household visits to inform community members about the trial and assessment activities. Formative research further strengthened rapport with community, highlighted community concerns, and identified HIV-related risk behaviours that informed questionnaire design. The process of obtaining informed consent began before assessment activities and provided an opportunity for individuals to discuss participation with their families and friends. Privacy during assessment, comprehensive follow-up care for those who tested positive for HIV/STDs, such as nutritional and prevention counselling, referral services for opportunistic infections, and antenatal-care options for pregnant women increased trust and credibility of the project. The sustained availability of trial staff to facilitate access to resources to address non-HIV/STD-related felt-needs further strengthened participation of the community members. These resources included liaison services with local government to obtain public services, such as water and electricity and resources, to address concerns, such as alcohol abuse and domestic violence. Based on this experience, an ethical framework is suggested for conducting HIV epidemiological risk assessment in developing countries. This framework discusses the role of community participation, transparent and comprehensive informed consent, timely dissemination of results, and access to follow-up care for those living with HIV/STDs.

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.

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.

The association of health-care use and hepatitis C virus infection in a random sample of urban slum community residents in southern India.

To determine whether health-care use was associated with prevalent hepatitis C virus (HCV) infection in Chennai, India, 1,947 adults from 30 slum communities were randomly selected to be interviewed about parenteral and sexual risks for HCV infection and to provide biological specimens for HCV and sexually transmitted infection (STI) testing. Prevalent HCV infection was detected in 2.4% of non-injection drug using (IDU) participants. Controlling for other associated factors, and excluding IDU, men who used informal health-care providers were five times as likely to be HCV infected as those who did not use informal providers (Adjusted Odds Ratio, AOR = 5.83; 95% confidence interval [CI]: 1.57, 21.6), a finding not detected in women. More research is needed to determine the extent to which HCV infection is associated with reuse of contaminated injection equipment in health-care settings in developing countries.

Development of an opinion leader-led HIV prevention intervention among alcohol users in Chennai, India.

In 1999, we began a community-based randomized controlled prevention trial in Chennai, which aims to test the efficacy of HIV prevention messages disseminated through members of an individual's social group called community popular opinion leaders, or CPOLs. We targeted patrons of 100 bars or wine shops in the city of Chennai, India. In this article we report on the process of development of an HIV prevention intervention for wine shop patrons. First, we conducted detailed ethnography to understand social norms and CPOL and social network characteristics, including 41 in-depth interviews among wine shop patrons and gatekeepers. Second, we tailored a generic HIV education training manual to appropriately address the needs of Chennai wine shop patrons. Field-testing involved 16 focus groups with wine shop patrons and 12 sessions of participant observations in wine shops. Finally, we piloted the intervention to determine the appropriateness of the training program and its content among wine shop patrons. Our ethnographic data indicated that wine shops are a common meeting place for men. We were able to identify CPOLs influential in these settings and train them to deliver appropriate prevention messages to their close friends and associates. We found that HIV prevention messages in this population need to dispel misperceptions about HIV transmission, provide strategies and skills to adopt and sustain condom use, and target the role of alcohol in sexual behavior. We outline specific lessons we learned in intervention development in this population.