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Cancer registries in oral cancer control in India
Journal of Cancer Policy 4 (2015) 13–14
Contents lists available at ScienceDirect
Journal of Cancer Policy journal homepage: www.elsevier.com/locate/jcpo
Short Report
Cancer registries in oral cancer control in India Priya Mohan a , Harry A. Lando b,∗ a b
Mohan Dental Clinic, Frazer Town, Bangalore, India University of Minnesota, 1300 South Second Street, Suite 300, Minneapolis, MN 55454-1015, USA
a r t i c l e
i n f o
Article history: Received 4 May 2015 Accepted 13 May 2015 Available online 28 May 2015 Keywords: Cancer Tobacco Registry Oral cancer India Dental Rural
a b s t r a c t Surveillance and research are the basic necessities for planning and promoting cancer control programs, therefore epidemiological data are crucial. National incidence data for global statistics are derived from population based cancer registries. Due to increasing tobacco prevalence, tobacco related oral lesions have increased. Although India has well developed cancer registries, overall oral cancer registration is questionable and there is a dearth of data on potentially malignant oral disorders and oral cancer in specific geographic locations. Oral cancer diagnostic services and cancer registries are concentrated in urban areas. It is extraordinarily difficult for cancer registries to cover a huge and growing population with diverse culture and habits. Additional challenges include an increase in aging populations and practical deficiencies in oral cancer registration in national cancer registries. There is, however, the possibility for acquiring data from outpatient records of dental colleges that are widely distributed throughout the subcontinent. These colleges are equipped with diagnostic services and trained practitioners and can assess and record potential malignant lesions, thereby providing valuable data that could be utilized for planning allocation of cancer resources. © 2015 Elsevier Ltd. All rights reserved.
Introduction
Cancer registration
Surveillance and research are the basic necessities for planning and promoting cancer control programs, therefore epidemiological data are crucial and cancer registries are a necessary part of the surveillance system [1]. There are substantial geographic variations in oral cancer risk within the Indian subcontinent [2] given the huge population, diverse cultures, variations in tobacco use, and dietary practices. Descriptive oral cancer data with respect to specific geographical areas are necessary to generate etiological hypotheses, to identify high-risk populations, and to allocate resources for prevention, intervention and treatment. Continuous monitoring and reporting of the magnitude of the cancer burden, trends in risk factors, effect of interventions, and treatment outcomes can all be recorded by cancer registries. However, there are serious deficiencies with respect to oral cancer registration in particular. This paper highlights the deficiencies in cancer registries in India with an emphasis on oral cancer and considers possibilities for overcoming these deficiencies.
Cancer registration is a mechanism to collect and classify information on all cancer cases in order to produce statistics on the occurrence of particular cancers and to provide a framework for assessing and controlling the impact of cancer in the community. Population based cancer registries (PBCR) collect and process data related to geographical area and provide information on incidence cases and incidence trends. Hospital based cancer registries (HBCR) relate to the data available from a specific hospital, and provide information on clinical methods such as diagnosis, stage distribution, treatment methods, and survival [1]. In India cancer registration is done by interviewing patients and by collecting data from hospital records, where workers from the registry scan through patient records.
∗ Corresponding author. Tel.: +1 6126241877; fax: +1 6126240315. E-mail addresses: [email protected] (P. Mohan), [email protected] (H.A. Lando). http://dx.doi.org/10.1016/j.jcpo.2015.05.006 2213-5383/© 2015 Elsevier Ltd. All rights reserved.
Usefulness of data from registries The major activity of registeries is to record cancer incidence rates – both Crude incidence and Age adjusted incidence rates. These data from the registries form the national database which is used for defining current magnitude and projecting future cancer incidence, planning cancer control programs and allocating resources [11]. Thus these data need to be recorded meticulously. Quality assurance in registry functioning is a necessary factor for
14
P. Mohan, H.A. Lando / Journal of Cancer Policy 4 (2015) 13–14
the data collected to be useful. Data for global statistics are also derived from these registries. In addition, the database provides clues for generating hypotheses regarding etiology and etiological research, identifying effective cancer control measures, and conducting research studies examining clinical and subsidiary outcomes. Data pertaining to the country’s cancer cases are utilized by the International Agency for Cancer Research (IARC) and the World Health Organization (WHO). IARC utilizes these data to conduct research focused on cancer etiology and prevention, thereby providing evidence on global cancer prevalence and incidence, etiology of cancer and mechanisms of carcinogenesis and helping to identify the most effective strategies for cancer prevention and early detection. WHO provides epidemiologic data and projections about cancer and promotes policy development and program implementation, The WHO report together with other IARC and WHO monographs, technical reports and scientific publications provides a sound basis on which to develop effective cancer control strategies [1]. Cancer registration deficiencies The registries reporting incidence of oral cancer are – Barshi PBCR, Chennai PBCR, Delhi PBCR, Dindigul Ambilikkai PBCR, Ernakulam, PBCR, Karunagapally PBCR, Mumbai PBCR, and Manipuri PBCR [3]. Of these, only three registries represent rural populations. This paucity of PBCRs covering the vast agrarian population is of particular concern given the lack of education and awareness together with increased use of tobacco in rural India [4]. Furthermore, cancer incident cases reported in cancer registries are lower than the actual rate [5]. Low-income and disadvantaged groups are generally exposed to risk factors such as environmental carcinogens and alcohol, and tobacco use, but there are no registries for the most populous and poorer states of Uttar Pradesh, Orissa, and Bihar (only in Patna) [2]. In rural areas of India the facilities for diagnosis of cancer are suboptimum, thus if an area has inadequate facilities for diagnosis even complete registration will fail to reflect the actual magnitude of cancer occurrence. Tobacco related oral lesions are prevalent due to increased tobacco use; more than one third of adults currently use tobacco [9]. Currently there is no system of registries for oral potentially malignant disorders (OPMDs) in India [2]. Data from cancer registries in different parts of the country indicate that the majority of oral cancer cases present at advanced stages [6]. Sufficient data must be obtained on these lesions in specific populations as well as on routes of progression to oral cancer from leukoplakia/erythroplakia, sequential progression of submucous fibrosis, and oral lichen planus [7]. Cancer registration in India is voluntary; many cases go unrecorded and/or are lost to followup [5]. Cancer incident cases reported in cancer registries are lower than the actual rate and also rural registries fail to record survival data [5]. Furthermore, approximately three-fourths of the Indian population lives in rural areas, yet mortality specific cancer is estimated from India’s twenty-four Urban PBCR and only the three rural registries [8,10]. Most of the deaths in rural India occur at home without medical attention; as a result mortality specific cancers are recorded from urban registries. There is a lack of documentation of agespecific mortality rates and total deaths from specific cancers from various regions and subpopulations. An alternative resource, the Million Death Study (MDS), focuses on geographic and social variation in specific cancers and the degree to which these cancers
might be avoidable by controlling their risk factors/causative agents. Conclusion India has well developed cancer registries, however, there are serious deficiencies related to the availability and sustenance of oral cancer diagnostic services in most rural areas. Due to the huge population, with just three rural registries even complete inclusion in existing registries would not cover the majority of the population. Thus the existing registries do not give a good indication of the actual magnitude of the problem. Data quality and completeness of coverage are prime requisites for understanding geographic and social distribution of specific cancers to spur further research on the etiology of cancer and to more effectively target cancer control programs. The current deficiencies could be ameliorated by expansion of the network, by developing more satellite cancer registries to address such a huge population, and by providing continuing education for registry workers to enhance quality. Considering the magnitude of the oral cancer rate and its high burden due to diagnosis at advanced stages, it is essential that diagnostic services be maintained adequately and also that research studies focused on developing economically viable methods of diagnosis be sufficiently encouraged and supported. Notification of oral cancer cases can be made compulsory such that data collection for PBCR would be facilitated by this legislation. Provision for registration of OPMDs and utilization of dental college outpatient records can be of immense help in registration of oral cancer case incidence. An MDS model can also be adapted for PBCR to cover social and geographic variations. This can be especially important in fostering cancer research in terms of etiology, prevention, tobacco intervention, and cancer treatment. Conflict of interest The authors have no competing interests. References [1] Petersen PE. Oral cancer prevention and control – the approach of the world. Oral Oncol 2008, http://dx.doi.org/10.1016/j.oraloncology.2008.05.023. [2] Bhavna G, Anura A, Newell WJ. Oral cancer in India continues in epidemic proportions: evidence base and policy initiatives. Int Dent J 2013;63:12–25. [3] Coelho KR. Challenges of the oral cancer burden in India. J Cancer Epidemiol 2012;2012:17. Article ID 701932, Accessed at http://www.hindawi. com/journals/jce/2012/701932/ on August 28, 2013. [4] Aruna DS, Prasad KVV, Shavi GR, Ariga J, Rajesh G, Krishna M. Retrospective study on risk habits among oral cancer patients in Karnataka cancer therapy and research institute, Hubli, India. Asian Pac J Cancer Prev 2011;12:1561–6. [5] Swaminathan R, Rama R, Shanta V. Lack of active follow-up of Cancer Patients in Chennai, India: implications for population-based survival estimates. Bull World Health Organ 2008;86(7):509–15. [6] Khandekar SP, Bagdey PS, Tiwari RR. Oral cancer and some epidemiological factors: a hospital-based study. Indian J Community Med 2006;31:57–159. [7] Yen AM, Chen SC, Chen TH. Dose–response relationships of oral habit associated with the risk of pre-malignant lesions among men who chew betel quid. Oral Oncol 2007;43:634–8. [8] Ferlay J, Shin HR, Bray F, Forman D, Mathers C, Parkin DM. GLOBOCAN 2008. Cancer incidence and mortality worldwide. Lyon, France: International Agency for Cancer Research; 2010. Available at http://globocan.iarc.fr [accessed 12.10.13]. [9] Goodson ML, Thomson PJ. Management of oral carcinoma: benefits of early precancerous intervention. Br J Oral Maxillofac Surg 2011;49:88–91. [10] National Cancer Registry Programme (NCRP). Three year report of population based cancer registries 2006–2008 incidence and distribution of cancer. Bangalore: Indian Council Med Res; 2010. [11] DSouza NDR, Murthy NS, Aras RY. Projection of cancer incident cases for India – till 2026. Asian Pac J Cancer Prev 2013;14:4379–86.
Contents lists available at ScienceDirect
Journal of Cancer Policy journal homepage: www.elsevier.com/locate/jcpo
Short Report
Cancer registries in oral cancer control in India Priya Mohan a , Harry A. Lando b,∗ a b
Mohan Dental Clinic, Frazer Town, Bangalore, India University of Minnesota, 1300 South Second Street, Suite 300, Minneapolis, MN 55454-1015, USA
a r t i c l e
i n f o
Article history: Received 4 May 2015 Accepted 13 May 2015 Available online 28 May 2015 Keywords: Cancer Tobacco Registry Oral cancer India Dental Rural
a b s t r a c t Surveillance and research are the basic necessities for planning and promoting cancer control programs, therefore epidemiological data are crucial. National incidence data for global statistics are derived from population based cancer registries. Due to increasing tobacco prevalence, tobacco related oral lesions have increased. Although India has well developed cancer registries, overall oral cancer registration is questionable and there is a dearth of data on potentially malignant oral disorders and oral cancer in specific geographic locations. Oral cancer diagnostic services and cancer registries are concentrated in urban areas. It is extraordinarily difficult for cancer registries to cover a huge and growing population with diverse culture and habits. Additional challenges include an increase in aging populations and practical deficiencies in oral cancer registration in national cancer registries. There is, however, the possibility for acquiring data from outpatient records of dental colleges that are widely distributed throughout the subcontinent. These colleges are equipped with diagnostic services and trained practitioners and can assess and record potential malignant lesions, thereby providing valuable data that could be utilized for planning allocation of cancer resources. © 2015 Elsevier Ltd. All rights reserved.
Introduction
Cancer registration
Surveillance and research are the basic necessities for planning and promoting cancer control programs, therefore epidemiological data are crucial and cancer registries are a necessary part of the surveillance system [1]. There are substantial geographic variations in oral cancer risk within the Indian subcontinent [2] given the huge population, diverse cultures, variations in tobacco use, and dietary practices. Descriptive oral cancer data with respect to specific geographical areas are necessary to generate etiological hypotheses, to identify high-risk populations, and to allocate resources for prevention, intervention and treatment. Continuous monitoring and reporting of the magnitude of the cancer burden, trends in risk factors, effect of interventions, and treatment outcomes can all be recorded by cancer registries. However, there are serious deficiencies with respect to oral cancer registration in particular. This paper highlights the deficiencies in cancer registries in India with an emphasis on oral cancer and considers possibilities for overcoming these deficiencies.
Cancer registration is a mechanism to collect and classify information on all cancer cases in order to produce statistics on the occurrence of particular cancers and to provide a framework for assessing and controlling the impact of cancer in the community. Population based cancer registries (PBCR) collect and process data related to geographical area and provide information on incidence cases and incidence trends. Hospital based cancer registries (HBCR) relate to the data available from a specific hospital, and provide information on clinical methods such as diagnosis, stage distribution, treatment methods, and survival [1]. In India cancer registration is done by interviewing patients and by collecting data from hospital records, where workers from the registry scan through patient records.
∗ Corresponding author. Tel.: +1 6126241877; fax: +1 6126240315. E-mail addresses: [email protected] (P. Mohan), [email protected] (H.A. Lando). http://dx.doi.org/10.1016/j.jcpo.2015.05.006 2213-5383/© 2015 Elsevier Ltd. All rights reserved.
Usefulness of data from registries The major activity of registeries is to record cancer incidence rates – both Crude incidence and Age adjusted incidence rates. These data from the registries form the national database which is used for defining current magnitude and projecting future cancer incidence, planning cancer control programs and allocating resources [11]. Thus these data need to be recorded meticulously. Quality assurance in registry functioning is a necessary factor for
14
P. Mohan, H.A. Lando / Journal of Cancer Policy 4 (2015) 13–14
the data collected to be useful. Data for global statistics are also derived from these registries. In addition, the database provides clues for generating hypotheses regarding etiology and etiological research, identifying effective cancer control measures, and conducting research studies examining clinical and subsidiary outcomes. Data pertaining to the country’s cancer cases are utilized by the International Agency for Cancer Research (IARC) and the World Health Organization (WHO). IARC utilizes these data to conduct research focused on cancer etiology and prevention, thereby providing evidence on global cancer prevalence and incidence, etiology of cancer and mechanisms of carcinogenesis and helping to identify the most effective strategies for cancer prevention and early detection. WHO provides epidemiologic data and projections about cancer and promotes policy development and program implementation, The WHO report together with other IARC and WHO monographs, technical reports and scientific publications provides a sound basis on which to develop effective cancer control strategies [1]. Cancer registration deficiencies The registries reporting incidence of oral cancer are – Barshi PBCR, Chennai PBCR, Delhi PBCR, Dindigul Ambilikkai PBCR, Ernakulam, PBCR, Karunagapally PBCR, Mumbai PBCR, and Manipuri PBCR [3]. Of these, only three registries represent rural populations. This paucity of PBCRs covering the vast agrarian population is of particular concern given the lack of education and awareness together with increased use of tobacco in rural India [4]. Furthermore, cancer incident cases reported in cancer registries are lower than the actual rate [5]. Low-income and disadvantaged groups are generally exposed to risk factors such as environmental carcinogens and alcohol, and tobacco use, but there are no registries for the most populous and poorer states of Uttar Pradesh, Orissa, and Bihar (only in Patna) [2]. In rural areas of India the facilities for diagnosis of cancer are suboptimum, thus if an area has inadequate facilities for diagnosis even complete registration will fail to reflect the actual magnitude of cancer occurrence. Tobacco related oral lesions are prevalent due to increased tobacco use; more than one third of adults currently use tobacco [9]. Currently there is no system of registries for oral potentially malignant disorders (OPMDs) in India [2]. Data from cancer registries in different parts of the country indicate that the majority of oral cancer cases present at advanced stages [6]. Sufficient data must be obtained on these lesions in specific populations as well as on routes of progression to oral cancer from leukoplakia/erythroplakia, sequential progression of submucous fibrosis, and oral lichen planus [7]. Cancer registration in India is voluntary; many cases go unrecorded and/or are lost to followup [5]. Cancer incident cases reported in cancer registries are lower than the actual rate and also rural registries fail to record survival data [5]. Furthermore, approximately three-fourths of the Indian population lives in rural areas, yet mortality specific cancer is estimated from India’s twenty-four Urban PBCR and only the three rural registries [8,10]. Most of the deaths in rural India occur at home without medical attention; as a result mortality specific cancers are recorded from urban registries. There is a lack of documentation of agespecific mortality rates and total deaths from specific cancers from various regions and subpopulations. An alternative resource, the Million Death Study (MDS), focuses on geographic and social variation in specific cancers and the degree to which these cancers
might be avoidable by controlling their risk factors/causative agents. Conclusion India has well developed cancer registries, however, there are serious deficiencies related to the availability and sustenance of oral cancer diagnostic services in most rural areas. Due to the huge population, with just three rural registries even complete inclusion in existing registries would not cover the majority of the population. Thus the existing registries do not give a good indication of the actual magnitude of the problem. Data quality and completeness of coverage are prime requisites for understanding geographic and social distribution of specific cancers to spur further research on the etiology of cancer and to more effectively target cancer control programs. The current deficiencies could be ameliorated by expansion of the network, by developing more satellite cancer registries to address such a huge population, and by providing continuing education for registry workers to enhance quality. Considering the magnitude of the oral cancer rate and its high burden due to diagnosis at advanced stages, it is essential that diagnostic services be maintained adequately and also that research studies focused on developing economically viable methods of diagnosis be sufficiently encouraged and supported. Notification of oral cancer cases can be made compulsory such that data collection for PBCR would be facilitated by this legislation. Provision for registration of OPMDs and utilization of dental college outpatient records can be of immense help in registration of oral cancer case incidence. An MDS model can also be adapted for PBCR to cover social and geographic variations. This can be especially important in fostering cancer research in terms of etiology, prevention, tobacco intervention, and cancer treatment. Conflict of interest The authors have no competing interests. References [1] Petersen PE. Oral cancer prevention and control – the approach of the world. Oral Oncol 2008, http://dx.doi.org/10.1016/j.oraloncology.2008.05.023. [2] Bhavna G, Anura A, Newell WJ. Oral cancer in India continues in epidemic proportions: evidence base and policy initiatives. Int Dent J 2013;63:12–25. [3] Coelho KR. Challenges of the oral cancer burden in India. J Cancer Epidemiol 2012;2012:17. Article ID 701932, Accessed at http://www.hindawi. com/journals/jce/2012/701932/ on August 28, 2013. [4] Aruna DS, Prasad KVV, Shavi GR, Ariga J, Rajesh G, Krishna M. Retrospective study on risk habits among oral cancer patients in Karnataka cancer therapy and research institute, Hubli, India. Asian Pac J Cancer Prev 2011;12:1561–6. [5] Swaminathan R, Rama R, Shanta V. Lack of active follow-up of Cancer Patients in Chennai, India: implications for population-based survival estimates. Bull World Health Organ 2008;86(7):509–15. [6] Khandekar SP, Bagdey PS, Tiwari RR. Oral cancer and some epidemiological factors: a hospital-based study. Indian J Community Med 2006;31:57–159. [7] Yen AM, Chen SC, Chen TH. Dose–response relationships of oral habit associated with the risk of pre-malignant lesions among men who chew betel quid. Oral Oncol 2007;43:634–8. [8] Ferlay J, Shin HR, Bray F, Forman D, Mathers C, Parkin DM. GLOBOCAN 2008. Cancer incidence and mortality worldwide. Lyon, France: International Agency for Cancer Research; 2010. Available at http://globocan.iarc.fr [accessed 12.10.13]. [9] Goodson ML, Thomson PJ. Management of oral carcinoma: benefits of early precancerous intervention. Br J Oral Maxillofac Surg 2011;49:88–91. [10] National Cancer Registry Programme (NCRP). Three year report of population based cancer registries 2006–2008 incidence and distribution of cancer. Bangalore: Indian Council Med Res; 2010. [11] DSouza NDR, Murthy NS, Aras RY. Projection of cancer incident cases for India – till 2026. Asian Pac J Cancer Prev 2013;14:4379–86.