Quality assessment of a rural population-based cancer registry (PBCR) at Ratnagiri, Maharashtra, India for the years 2017-18.

Background: Cancer registries are valuable resources for cancer control and research. To justify their purpose, their data should be of satisfactory quality by being comparable internationally, complete in their coverage, valid in their values and timely in reporting. This study aimed to assess the quality of the Ratnagiri Population Based Cancer Registry's data for the years 2017-18 across the four dimensions of data quality. Methods: Regarding comparability, the registry procedure was reviewed vis-à-vis the rules they follow for cancer registry operation. We have used four methods for validity: re-abstraction and re-coding, diagnostic criteria methods- like the percentage of microscopically verified (MV%) and of death certificate only (DCO%) cases, missing information like proportion of cases of primary site unknown (PSU%) and internal validity. Semi-quantitative methods were employed for assessing completeness. Timeliness for all years of registry functioning was assessed qualitatively. Results: The overall accuracy rate of the registry was found to be 91.1% (94.7% for demographic and 88% for tumour details). Mortality to incidence ratios were found to be 0.50 for females and 0.59 for males. MV% was found to be 90.8% for males and 91.5% for females. The average number of sources per case was found to be 1.5. DCO% was found to be 2.7%. PSU% was 7.4%. Conclusion: We have positive results regarding the data's validity and comparability, but there is scope for improvement concerning completeness. Continuous training of the registry personnel and monitoring of the registry is recommended.

An assessment of childhood cancer care services in India - gaps, challenges and the way forward.

Background: Childhood cancers are emerging as an essential concern in India where there is lack of a specific programme component or policy to address childhood cancer control. There is limited information on the status and quality of childhood cancer care services in India. This paper describes the childhood cancer care services available at secondary and tertiary-level hospitals in India through a cross sectional study design. Methods: The survey was conducted in 137 tertiary-level and 92 secondary-level hospitals in 26 states and 4 Union Territories (UTs), ensuring a uniform representation of public and private care hospitals. The study tool collected data on the organisational infrastructure, type of oncology services, health workforce, equipment, treatment and referral protocols, and treatment guidelines. Descriptive statistics was used to primarily present the health service status and data on childhood cancer care services in proportions and mean. Findings: A dedicated pediatric oncology department was available in 41.6% of the public, 48.6% of private, and 64% Non Government Organization (NGO) managed tertiary-level hospitals. In 36 (39%) of the 92 hospitals providing secondary care, childhood cancer care was provided. The availability of bone (41.5%) and positron emission tomography (PET) scans (25.9%) was lower in public tertiary hospitals, whereas histopathology, computerised tomography (CT scan), and magnetic resonance imaging (MRI) were lower in public secondary hospitals than private and NGO managed hospitals for the corresponding level of care. Most tertiary hospitals had the required supportive care facilities except for play therapy and hospice care. Less than 50% of the public tertiary hospitals had stocks of the four categories of cancer-treating drugs and essential infrastructure for radiotherapy and chemotherapy. Most secondary-level hospitals not treating childhood cancer had referral linkages with tertiary hospitals. Interpretation: The situational analysis of childhood cancer care services in India showed the concentration of availability of childhood cancer care services at the tertiary level of health care. There were gaps in the availability of specialised pediatric oncology care in all the tertiary hospitals. The availability of childhood cancer care services was higher in private and NGO-managed hospitals than in public hospitals. Integration of childhood cancer as a part of the national cancer control response should be taken up as a matter of priority. The need of the hour is to formulate a childhood cancer policy that will enable timely access to care universally. Funding: World Health Organization, India provided funding and technical support.

Epidemiologic Pattern of Cancer in Kathmandu Valley, Nepal: Findings of Population-Based Cancer Registry, 2018.

PURPOSE: Although cancer is an important and growing public health issue in Nepal, the country lacked any population-based cancer registry (PBCR) until 2018. In this study, we describe the establishment of the PBCR for the first time in Nepal and use the registry data to understand incidence, mortality, and patterns of cancer in the Kathmandu Valley (consisting of Kathmandu, Lalitpur, and Bhaktapur districts), which comprises 10.5% of the estimated 29 million population of Nepal in 2018. MATERIALS AND METHODS: The PBCR collects information from facilities and communities through the active process. The facilities include cancer or general hospitals, pathology laboratories, hospice, and Ayurvedic centers. In the communities, the field enumerators or female community health volunteers collected the data from the households. In addition, the Social Security and Nursing Division under the Department of Health Services, which provides subsidy for cancer treatment of underprivileged patients, was another major source of data. The collected data were verified for residence, accuracy, and completeness and then entered and analyzed using CanReg5 software. RESULTS: In the Kathmandu Valley, the PBCR registered 2,156 new cancer cases with overall age-adjusted incidence rate for all cancers of 95.7 per 100,000 population (95.3 for males and 98.1 for females). The age-adjusted mortality rate for males was 36.3 (n = 365) and for females 27.0 (n = 305) per 100,000 population. We found that the commonest cancers in males were lung and stomach, whereas in females, they were breast and lung cancer. Gallbladder cancer was among the top five common cancers in both sex. CONCLUSION: These findings provide a milestone to understand the cancer burden in the country for the first time using the PBCR and will be helpful to develop and prioritize cancer control strategies.

"Registries are not only a tool for data collection, they are for action": Cancer registration and gaps in data for health equity in six population-based registries in India.

In India, population-based cancer registries (PBCRs) cover less than 15% of the urban and 1% of the rural population. Our study examines practices of registration in PBCRs in India to understand efforts to include rural populations in registries and efforts to measure social inequalities in cancer incidence. We selected a purposive sample of six PBCRs in Maharashtra, Kerala, Punjab and Mizoram and conducted semistructured interviews with staff to understand approaches and challenges to cancer registration, and the sociodemographic information collected by PBCRs. We also conducted a review of peer-reviewed literature utilizing data from PBCRs in India. Findings show that in a context of poor access to cancer diagnosis and treatment and weak death registration, PBCRs have developed additional approaches to cancer registration, including conducting village and home visits to interview cancer patients in rural areas. Challenges included PBCR funding and staff retention, abstraction of data in medical records, address verification and responding to cancer stigma and patient migration. Most PBCRs published estimates of cancer outcomes disaggregated by age, sex and geography. Data on education, marital status, mother tongue and religion were collected, but rarely reported. Two PBCRs collected information on income and occupation and none collected information on caste. Most peer-reviewed studies using PBCR data did not publish estimates of social inequalities in cancer outcomes. Results indicate that collecting and reporting sociodemographic data collected by PBCRs is feasible. Improved PBCR coverage and data will enable India's cancer prevention and control programs to be guided by data on cancer inequities.

Menstrual pad, a cervical cancer screening tool, a population-based study in rural India.

In the rural areas of India, women generally use a piece of old cloth as a menstrual device. The aim of this study was to detect human papilloma virus (HPV) from menstrual blood on the menstrual pad and assess whether this could be a useful screening tool for cervical cancer. In Jamkhed area of rural Maharashtra, (population A), we collected menstrual pads from women who provided consent in the 30-50 year age group. The women who had provided menstrual pads underwent HC2 testing. We standardized the method for extracting DNA by PCR from the menstrual pad. The women who tested HPV positive, on the basis of HC2/PCR testing, underwent colposcopy. In the rural population of Pune area of Maharashtra state (population B), menstrual pads were collected. HPV was tested using the PCR method. HPV-positive women and a few HPV-negative women, selected randomly, underwent colposcopy and HC2 testing. In population A, 164 women provided their used menstrual pads and also underwent an HC2 screening test. Of these, six (3.2%) cases were reported as HPV positive. In population B, 365 women provided their used menstrual pads for HPV testing, of which 18 (4.9%) cases were diagnosed as HPV positive. The women who tested HPV positive, on the basis of PCR testing, and 10% randomly selected HPV-negative cases (37) and 18 women who voluntary requested testing underwent colposcopy and HC2 testing. The sensitivity of menstrual pad HPV testing compared with gold standard HC2 testing was 83% [95% confidence interval (CI): 0.47-0.97], 67% (95% CI: 0.30-0.91) and specificity was 99% (95% CI: 0.96-0.99), 88% (95% CI: 0.77-0.94) in population A and population B, respectively. The sensitivity of diagnosing CIN lesion was 83% (95% CI: 0.44-0.97) and specificity was 95% (95% CI: 0.91-0.97). On the basis of the sensitivity and specificity results, and the completely noninvasive, simple and convenient method of detecting HPV, menstrual pad might be considered a cervical cancer screening tool in rural Indian women.

Determinants of womens participation in cervical cancer screening trial, Maharashtra, India.

OBJECTIVE: To determine the factors associated with participation in cervical cancer screening and follow-up treatment in the context of a randomized controlled trial. The trial was initiated to evaluate the efficacy and cost effectiveness of visual inspection with acetic acid, cytological screening and testing for human papillomavirus in reducing the incidence of and mortality from cervical cancer in Maharashtra, India. METHODS: Between October 1999 and November 2003 women aged 30-59 years were randomized to receive one of the three tests or to a control group. Participation was analysed for all three intervention arms. The differences between those who were screened versus those who were not was analysed according to the sociodemographic characteristics of the 100,800 eligible women invited for screening. Those who were treated versus those who were not were analysed according to the sociodemographic characteristics of the 932 women diagnosed with high-grade lesions. Participation in screening and compliance with treatment were also analysed according to the type of test used. FINDINGS: Compared with women who were not tested, screened women were younger (aged 30-39), better educated and had ever used contraception. A higher proportion of screened women were married and a lower proportion had never been pregnant. Of the 932 women diagnosed with high-grade lesions or invasive cancer, 85.3% (795) received treatment. Women with higher levels of education, who had had fewer pregnancies and those who were married were more likely to comply with treatment. There were no differences in rates of screening or compliance with treatment when results were analysed by the test received. CONCLUSIONS: Irrespective of the test being used, good participation levels for cervical cancer screening can be achieved in rural areas of developing countries by using appropriate strategies to deliver services. Communication methods and delivery strategies aimed at encouraging older, less-educated women, who have less contact with reproductive services, are needed to further increase screening uptake.

Screening for cervical cancer in India: How much will it cost? A trial based analysis of the cost per case detected.

The cost and cost effectiveness of screening previously unscreened women by VIA, cytology or HPV testing was investigated within a large cluster randomised trial involving 131,178 women in rural India. All resources involved in implementation, training, management, recruitment, screening and diagnosis were identified and costed. We estimated the total costs and detection rates for each cluster and used these data to calculate an average cluster cost and detection rate for each screening approach. These estimates were combined to estimate a cost per case of cervical intraepithelial neoplasia grade 2/3 or invasive cancer (CIN 2/3+) detected. The average total costs per 1,000 women eligible for screening were US dollar 3,917, US dollar 6,609 and US dollar 11,779 with VIA, cytology and HPV respectively. The cost of detecting a case of CIN2/3+ using VIA was dollar 522 (95% CI dollar 429- dollar 652). Our results suggest that more CIN2/3+ cases would be detected in the same population if cytology were used instead of VIA and each additional case would cost US dollar 1065 (95% CI dollar 713- dollar2175). Delivering cervical cancer screening is potentially expensive in a low-income country although costs might be lower outside a trial setting. We found screening with VIA to be the least expensive option, but it also detected fewer cases of CIN2/3+ than other methods; its long-term cost-effectiveness will depend on the long-term benefits of early detection. Cytology was more effective at detecting cases than VIA but was also more expensive. Our findings indicate that HPV may not be a cost effective screening strategy in India at current consumable prices.

A cluster randomized controlled trial of visual, cytology and human papillomavirus screening for cancer of the cervix in rural India.

The impact of screening by visual inspection with acetic acid (VIA), cytology or HPV testing on cervical cancer incidence and mortality is investigated in a cluster randomized controlled trial in India. We report findings after the screening phase, when 52 clusters, with a total of 142,701 women aged 30-59 years in Osmanabad District, India, were randomized into 4 arms for a single round of screening by trained midwives with either VIA, cytology or HPV testing as well as a control group. All laboratory tests were done locally. Test-positive women underwent investigations (colposcopy/biopsy) and treatment in the base hospital. Data on participation, test positivity, positive predictive value and detection rates of cervical neoplasia were analyzed using cluster design methodology. Of the eligible women, 72-74% were screened. Test positivity rates were 14.0% for VIA, 7.0% for cytology and 10.3% for HPV. The detection rate of high-grade lesions was similar in all intervention arms (0.7% for VIA, 1.0% for cytology and 0.9% for HPV testing) (p = 0.06, Mann-Whitney test). While the detection rate for VIA dropped to 0.5% with declining test positivity during the course of the study, it remained constant for cytology and HPV testing. Over 85% of women with high-grade lesions received treatment. Our results show that a high level of participation and good-quality cytology can be achieved in low-resource settings. VIA is a useful alternative but requires careful monitoring. Detection rates obtained by HPV testing were similar to cytology, despite higher investments.