"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

Cervical Cancer Control in Rural India

Intian yli miljardiin nousevasta väestöstä noin kolme neljännestä asuu maaseudulla, jossa syövän toteamis- ja hoitomahdollisuudet ovat vähäiset. Kohdunkaulan syöpä on siellä yleisin syöpätauti. Intian suurin syöpäkeskus Tata Memorial Centre (TMC) Mumbaissa on organisoinut maaseutusairaalan ja syöpäkeskuksen Barshiin, 450 km päähän. Sen keskeisenä tehtävänä oli toteuttaa kohdunkaulan syöväntorjuntaohjelma. Väitöskirja kuvaa ohjelman eri osia ja arvioi niitten toteutettavuutta ja vaikuttavuutta. Alueelle perustettiin syöpärekisteri, jonka tehtävät olivat laajat. Syöpärekisterin avulla lisättiin syöpätietoisuutta ja sen henkilökunnan aktiivisella kyliin suuntautuneella jäljitysmenetelmällä löydettiin oireiset potilaat. Syöpäongelman laajuutta ja varsinkin valistusohjelman vaikuttavuutta voitiin arvioida. Kohdunkaulan syövän vaara oli noin 6-kertainen Suomeen verrattuna. Valistusohjelman ansiosta suurin osa syövistä todettiin paikallisena. Monien potilaiden hoito jäi kuitenkin kesken eikä lopulta kuolleisuudessa ollut eroa koe- ja vertailualueen välillä. Barshin syöpäkeskus käynnisti yhteistyössä kansainvälisen syöpätutkimuskeskuksen (IARC) kanssa maailman laajimman satunnaistetun kohdunkaulan syövän seulontakokeen. Yli 120 000 naista seulottiin joko kliinisesti tutkimalla tai ottamalla näyte, joka tutkittiin perinteisellä papa-testillä tai virustestillä. Osallistuminen oli 70% ja nuoret, koulutetut hyvätuloiset naiset osallistuivat parhaiten. Jokainen seulontatesti löysi löysi paikallisia syöpiä, mutta terveeksi itsensä tuntevat naiset eivät pitäneet hoitoa tarpeellisena. Väitöskirjassa luonnostellaan lopuksi keinoja laajentaa Barshin syöpäkeskuksen kokemuksia Intian muille maaseutualueille.India is a large country with different religions, languages and social classes. The population has crossed 1 billion, 72 % of which resides in rural area. As per the 2001 census there are 638,588 villages in India. India accounts for a quarter of world cervical cancer burden having 132,000 new cases and 74,000 deaths occurred around 2002 as per the estimation of the International Agency for Research on Cancer, Lyon, France (IARC). More than 70% of the cases present themselves in the late stage of the disease. Very few studies for the prevention of cervical cancer in a rural population of India were conducted. Tata Memorial Centre (TMC), Mumbai is one of the premier institutes in India for cancer care and the regional cancer centre for Maharashtra state of India. The TMC has encouraged the NGO Nargis Dutt Memorial Cancer Hospital (NDMCH) Barshi (Barshi is a small town, 450 km away from Mumbai) under its rural cancer extension project and provided continuing technical assistance to organize and develop community cancer services in the rural area of Solapur and Osamanabad district. The NDMCH conducted cervical cancer control studies in the rural area of Barshi. Based on the experience of the studies conducted at NDMCH, this thesis focuses on the prevention of cervical cancer and describes the infrastructure, resources and manpower needed in rural India. The TMC, NDMCH and Indian Council of Medical Research New Delhi, established first Rural Cancer Registry in India at Barshi. The method of cancer registration is different from the urban cancer registries of the country. The method is based on creating the cancer awareness in the rural population and identification of symptomatic cases and motivation of theses symptomatic cases for the diagnosis by arranging the clinic with the mobile van or at NDMCH. The registry reported that cervical cancer is the leading cancer site, the incidence 27 per 100,000 and mortality 18.6 per 100,000 in the period 1988-2000 was reported. Due to creating the cancer awareness and providing the easy access to diagnosis it was observed that more than 50 % cervical cancer cases were diagnosed at early stage. This hypothesis that due to creating cancer awareness and providing easy access to diagnosis, the cervical cancer cases can be detected at an early stage, was tested in two sub-districts nearby Barshi. In one sub-district health education on cervical cancer was provided by group meeting and film show. Symptomatic women were motivated for the diagnosis at the detection clinic or at NDMCH. In control area sub-district health education on cervical cancer was not provided they received routing health message only from government health agency. The study was conducted in the period 1995-2002, it was observed that awareness about the disease in the women was increased due to effect of health education, 55 % cervical cancer cases detected at early stage of the disease as compared to control area. But it was found that those who detected early did not complete the treatment as compared to control area. The villagers attitude was until the disease became severe enough that they were unable to work and bedridden they would consult the doctor. The several hospital visits before the treatment, transportation problems and financial barriers were further important factors for not completing the treatment. After seven years of the study we did not find any difference between the mortality of the disease between the two groups. No treatment or delay in treatment diluted the intervention effect. Due to experience in cervical cancer control activity of NDMCH Barshi, the IARC in collaboration with TMC conducted the world s largest randomized controlled trial for cervical cancer screening to evaluate the comparative efficacy and cost effectiveness of three screening approaches: VIA (visual inspection of cervix after application of 4 % acetic acid), cytology and HPV testing. More than 125,000 women from Osmanabad district participated in this trial. The screening attendance and process indicators of this study are discussed in the thesis. More than 70 % of the women participated in the screening. Participation was high in women who were young, educated, married, belonging to a higher income group. Those who participated reported that their husband encouraged them. The common reason given by non participant women was that they do not feel that such a test was necessary. Fear of the test was another reason reported. The stage Ia cases reported in the range of 39 to 50 %. However, early stages were reluctant for the treatment as they did not feel that the disease was severe enough for hospitalization. These cases were motivated for the treatment with the help of the village leader. The low income group and widowed women refused treatment. Based on the experience of the studies conducted at NDMCH, a cervical cancer control plan for rural India is proposed. There are 25 Regional Cancer Centres (RCC) in the country, more than 210 centres having 345 teletherapy facility and 105 centres are actively involved in Cancer Atlas Project of India. The plan proposed that RCC should develop community cancer centres in the town hospital, in the district hospital, in the radiotherapry centre and in the centres who are actively involved in cancer atlas project by using the available infrastructure and resources. The method suggested for cervical cancer prevention by community cancer centre consist of intensive health education and providing easy access to diagnosis and treatment. The main focus is diagnosing and treating the pre-invasive lesion rather than detecting invasive cases showing our experience of poor compliance to the treatment. The cost estimated for 1 centre for providing the services of 200,000 female population is US dollar 26,864 per year. Using the available infrastructure 300 community centres can be developed, which will give the services to 60 million female population of rural area of India. The author gratefully acknowledges his supervisor Prof Matti Hakama of Tampere School of Public Health and the Finnish Cancer Registry for their support and help. The author gratefully acknowledges the financial support given by CIMO, Finland and IARC, Lyon, France

Cervical Cancer Control in Rural India

Intian yli miljardiin nousevasta väestöstä noin kolme neljännestä asuu maaseudulla, jossa syövän toteamis- ja hoitomahdollisuudet ovat vähäiset. Kohdunkaulan syöpä on siellä yleisin syöpätauti. Intian suurin syöpäkeskus Tata Memorial Centre (TMC) Mumbaissa on organisoinut maaseutusairaalan ja syöpäkeskuksen Barshiin, 450 km päähän. Sen keskeisenä tehtävänä oli toteuttaa kohdunkaulan syöväntorjuntaohjelma. Väitöskirja kuvaa ohjelman eri osia ja arvioi niitten toteutettavuutta ja vaikuttavuutta. Alueelle perustettiin syöpärekisteri, jonka tehtävät olivat laajat. Syöpärekisterin avulla lisättiin syöpätietoisuutta ja sen henkilökunnan aktiivisella kyliin suuntautuneella jäljitysmenetelmällä löydettiin oireiset potilaat. Syöpäongelman laajuutta ja varsinkin valistusohjelman vaikuttavuutta voitiin arvioida. Kohdunkaulan syövän vaara oli noin 6-kertainen Suomeen verrattuna. Valistusohjelman ansiosta suurin osa syövistä todettiin paikallisena. Monien potilaiden hoito jäi kuitenkin kesken eikä lopulta kuolleisuudessa ollut eroa koe- ja vertailualueen välillä. Barshin syöpäkeskus käynnisti yhteistyössä kansainvälisen syöpätutkimuskeskuksen (IARC) kanssa maailman laajimman satunnaistetun kohdunkaulan syövän seulontakokeen. Yli 120 000 naista seulottiin joko kliinisesti tutkimalla tai ottamalla näyte, joka tutkittiin perinteisellä papa-testillä tai virustestillä. Osallistuminen oli 70% ja nuoret, koulutetut hyvätuloiset naiset osallistuivat parhaiten. Jokainen seulontatesti löysi löysi paikallisia syöpiä, mutta terveeksi itsensä tuntevat naiset eivät pitäneet hoitoa tarpeellisena. Väitöskirjassa luonnostellaan lopuksi keinoja laajentaa Barshin syöpäkeskuksen kokemuksia Intian muille maaseutualueille.India is a large country with different religions, languages and social classes. The population has crossed 1 billion, 72 % of which resides in rural area. As per the 2001 census there are 638,588 villages in India. India accounts for a quarter of world cervical cancer burden having 132,000 new cases and 74,000 deaths occurred around 2002 as per the estimation of the International Agency for Research on Cancer, Lyon, France (IARC). More than 70% of the cases present themselves in the late stage of the disease. Very few studies for the prevention of cervical cancer in a rural population of India were conducted. Tata Memorial Centre (TMC), Mumbai is one of the premier institutes in India for cancer care and the regional cancer centre for Maharashtra state of India. The TMC has encouraged the NGO Nargis Dutt Memorial Cancer Hospital (NDMCH) Barshi (Barshi is a small town, 450 km away from Mumbai) under its rural cancer extension project and provided continuing technical assistance to organize and develop community cancer services in the rural area of Solapur and Osamanabad district. The NDMCH conducted cervical cancer control studies in the rural area of Barshi. Based on the experience of the studies conducted at NDMCH, this thesis focuses on the prevention of cervical cancer and describes the infrastructure, resources and manpower needed in rural India. The TMC, NDMCH and Indian Council of Medical Research New Delhi, established first Rural Cancer Registry in India at Barshi. The method of cancer registration is different from the urban cancer registries of the country. The method is based on creating the cancer awareness in the rural population and identification of symptomatic cases and motivation of theses symptomatic cases for the diagnosis by arranging the clinic with the mobile van or at NDMCH. The registry reported that cervical cancer is the leading cancer site, the incidence 27 per 100,000 and mortality 18.6 per 100,000 in the period 1988-2000 was reported. Due to creating the cancer awareness and providing the easy access to diagnosis it was observed that more than 50 % cervical cancer cases were diagnosed at early stage. This hypothesis that due to creating cancer awareness and providing easy access to diagnosis, the cervical cancer cases can be detected at an early stage, was tested in two sub-districts nearby Barshi. In one sub-district health education on cervical cancer was provided by group meeting and film show. Symptomatic women were motivated for the diagnosis at the detection clinic or at NDMCH. In control area sub-district health education on cervical cancer was not provided they received routing health message only from government health agency. The study was conducted in the period 1995-2002, it was observed that awareness about the disease in the women was increased due to effect of health education, 55 % cervical cancer cases detected at early stage of the disease as compared to control area. But it was found that those who detected early did not complete the treatment as compared to control area. The villagers attitude was until the disease became severe enough that they were unable to work and bedridden they would consult the doctor. The several hospital visits before the treatment, transportation problems and financial barriers were further important factors for not completing the treatment. After seven years of the study we did not find any difference between the mortality of the disease between the two groups. No treatment or delay in treatment diluted the intervention effect. Due to experience in cervical cancer control activity of NDMCH Barshi, the IARC in collaboration with TMC conducted the world s largest randomized controlled trial for cervical cancer screening to evaluate the comparative efficacy and cost effectiveness of three screening approaches: VIA (visual inspection of cervix after application of 4 % acetic acid), cytology and HPV testing. More than 125,000 women from Osmanabad district participated in this trial. The screening attendance and process indicators of this study are discussed in the thesis. More than 70 % of the women participated in the screening. Participation was high in women who were young, educated, married, belonging to a higher income group. Those who participated reported that their husband encouraged them. The common reason given by non participant women was that they do not feel that such a test was necessary. Fear of the test was another reason reported. The stage Ia cases reported in the range of 39 to 50 %. However, early stages were reluctant for the treatment as they did not feel that the disease was severe enough for hospitalization. These cases were motivated for the treatment with the help of the village leader. The low income group and widowed women refused treatment. Based on the experience of the studies conducted at NDMCH, a cervical cancer control plan for rural India is proposed. There are 25 Regional Cancer Centres (RCC) in the country, more than 210 centres having 345 teletherapy facility and 105 centres are actively involved in Cancer Atlas Project of India. The plan proposed that RCC should develop community cancer centres in the town hospital, in the district hospital, in the radiotherapry centre and in the centres who are actively involved in cancer atlas project by using the available infrastructure and resources. The method suggested for cervical cancer prevention by community cancer centre consist of intensive health education and providing easy access to diagnosis and treatment. The main focus is diagnosing and treating the pre-invasive lesion rather than detecting invasive cases showing our experience of poor compliance to the treatment. The cost estimated for 1 centre for providing the services of 200,000 female population is US dollar 26,864 per year. Using the available infrastructure 300 community centres can be developed, which will give the services to 60 million female population of rural area of India. The author gratefully acknowledges his supervisor Prof Matti Hakama of Tampere School of Public Health and the Finnish Cancer Registry for their support and help. The author gratefully acknowledges the financial support given by CIMO, Finland and IARC, Lyon, France