Childhood cancers in India: Burden, barriers, and breakthroughs
Arora B, Kanwar V
Associate Professor Pediatric Hematology Oncology, Albany Medical Center, 43 New Scotland Ave MC-24, Albany NY 12208, UA
Correspondence Address:Associate Professor Pediatric Hematology Oncology, Albany Medical Center, 43 New Scotland Ave MC-24, Albany NY 12208, UA
Code Number: cn09065
Childhood cancer contributes to less than 5% of the total cancer burden in India, with approximately 45,000 children diagnosed with cancer every year. In the developed countries 80% of the children with cancer are cured. Therefore, in India, the cure for children with cancer should be a priority.  To achieve such rates of cure, we need to define the burden with accurate data, determine where the barriers exist and intervention may be beneficial, and measure the impact of any intervention made. To this end, Arora and his colleagues have taken the admirable first step of providing a comprehensive picture of the epidemiology of childhood cancer in India, and have done a commendable job of reviewing the available literature and including data from 13 population-based cancer registries (PBCR) across India. 
Population-based cancer registries have enabled us to improve our understanding of the problem we face: In 1966, 32 registries reported their results in volume I of Cancer Incidence in Five Continents , and 40 years later, there were 449 members of the International Association of Cancer Registries covering 21% of the world population.  However, PBCRs have inherent problems, the primary one being the difficulty of ensuring comprehensive data collection. Even in the so-called resource-rich environments, childhood cancers may go unreported to PBCRs.  Nevertheless in North America 99% of the cancer patients are reported to a PBCR, whereas, the estimate for South Asia is only 8%.  There are further problems in India: as cancer is not a notifiable disease, PBCRs must rely heavily on the diligence and experience of their workers in seeking out hospital data and death certificate information. The Kolkata cancer registry employs only six trained cancer registrars to visit 50 potential data sources at regular intervals to abstract data on cancer cases,  and it is probably not a coincidence that the more experienced PBCR in Chennai records a much higher incidence of childhood cancer. 
In India, quantifying the burden also faces other barriers: parents may not recognize the signs of cancer, or not have the resources to get the patient to a medical facility. Once at a clinic or hospital, lack of resources or medical equipment may mean the diagnosis is not made. Even when cancer is recognized, the family may lack the funds to pursue treatment and decide to abandon therapy before the patient is registered. The precise abandonment rates for childhood cancer patients in India are unknown, but range from 10-63%.  In view of all the situations just described, the childhood cancer case will be “invisible” to the cancer registry.
Arora et al . recognize these drawbacks in the PBCR methodology, and hypothesize that these may account for the apparent low incidence of childhood cancer in rural areas, in India.  In other low-income countries, Howard et al . noted such a disparity in childhood cancer incidence rates to be most acute in Acute Lymphoblastic Leukemia (ALL), where the incidence in low-income countries was three-fold lower than the United States and Western Europe.  They speculated that the insidious onset of pre-B ALL might cause it to go undiagnosed prior to death. As T-cell ALL has a florid, easily diagnosed clinical presentation, this could therefore account for the higher-than-expected incidence of T-cell ALL noted in India.  Interestingly this pattern is fast changing, and at the Tata Memorial Hospital (TMH), the incidence of Pre-B ALL has increased from 64 to 78% over the last 10 years. 
A similar mechanism may explain the predominance of large cell and T-lymphoblastic subsets of Non Hodgkin Lymphoma (NHL), which are easily recognized and managed, while Burkitt′s Lymphoma is often underdiagnosed and usually rapidly fatal due to metabolic and surgical complications.  Increased preregistration deaths due to metabolic and other complications might also account for the lower incidence of NHL compared to the relatively indolent Hodgkin′s Lymphoma (HL).  Pearce et al . describe a negative correlation between economic resources and the likelihood that female patients would receive medical diagnosis and care and this may account for an apparent male predominance of patients, although the striking sex ratio difference observed for HL in Delhi clearly warrants further scrutiny. 
Once the burden of childhood cancer in India is effectively defined, we can focus on gathering therapeutic and outcome data to achieve better cure rates. Under the SIOP model, the core unit for provision of childhood cancer care is the multidisciplinary pediatric cancer unit (PCU).  Although hospital-based cancer registries also exist, a PCU-based cancer registry can effectively collect data targeted toward therapeutic management and its outcome. To this extent, it is complementary to a PBCR, which has a focus on population-based cancer control and prevention. In order to achieve breakthroughs in childhood cancer cure rates in any country, and to know which treatment strategies will work, PCU-based registries play a vital role.  They have the ability to rapidly and accurately capture the initial diagnosis, treatment, abandonment rates, death from toxicity, and relapse rates; and also to measure the impact of improved supportive care, parent support and education, and protocol-based therapy. Ayoub et al ., demonstrated in Honduras, how a minimal investment of time and resources allowed data managers to work with a web-based database system in gathering precise outcome data from childhood cancer patients.  In the My Child Matters™ project, designed to improve childhood cancer care in 10 low-income countries, the International Union against Cancer (UICC) found that their major challenge was gathering reliable data on childhood cancer in the countries concerned. 
In India, successful collaborative efforts to improve the outcome of children with cancer are well documented. For example, use of the MCP-841 protocol at three centers, developed in collaboration with the National Cancer Institute, USA, has resulted in the improvement of long-term ALL survival rates, from 20 to 60%.  This effort has also involved collaboration with the International Network for Cancer Treatment and Research (INCTR), to effectively collect the outcome data for ALL patients treated on this protocol.  To improve physician experience, a successful national training program in practical pediatric oncology (NTP-PPO) has been initiated by the Pediatric Hematology Oncology (PHO) chapter of the Indian Academy of Pediatrics (IAP). 
To complement these, and many other efforts, the Jiv Daya Foundation recently launched the Indian Pediatric Oncology Initiative™, to provide support to existing PCUs for human resource development, such as, doctors, nurses, nutritionists, pharmacists, counselors, social workers, and data managers. As part of this effort, the Foundation now provides free access to an online web-based India Pediatric Oncology Database (IndiaPOD) at http://www.indiapod.org, with training and support for data managers. The data is stored securely and remains the property of the institution concerned, which can use it for internal quality assessment, clinical research, and academic publication. This provides individual institutions with the ability to modify clinical practice for patient benefit.
With the formation of national cooperative groups such as Indian Cooperative Oncology Network (ICON) and the Indian National Pediatric Oncology Group (INPOG), IndiaPOD may eventually serve as a platform for pediatric oncologists in India to collaborate on clinical studies. The system is designed to collect data on the entire spectrum of childhood cancer. Five institutions have already begun entering data in this system: The Tata Memorial Hospital (TMH), Mumbai, Lokmanya Tilak Muncipal General Hospital (LTMG), Mumbai, Nizam Institute of Medical Sciences, Hyderabad, Regional Cancer Center, Trivandrum, and Christian Medical College, Vellore. As of 31 July 2009, 1011 patients had been registered, the majority from TMH. By the end of 2009, All India Institute of Medical Sciences, New Delhi and another four institutions are expected to come online.
India is fortunate to have several well-established PBCRs, and Arora and colleagues have made a valuable contribution by integrating data from these and other sources, to provide a “snapshot” of the burden of childhood cancer in India. However, to break down barriers and achieve breakthroughs, we need a robust mechanism to measure the impact of our efforts, and we anticipate that PCU-based registries will allow us to do that. The web-based data entry system IndiaPOD located at http://www.indiapod.org, uses a model for data collection that has been proven in similar environments, and we hope that in years to come it will prove a valuable resource not just to pediatric oncologists in India, but to researchers, epidemiologists, administrators, support groups, and all individuals dedicated to the effective treatment of childhood cancer in India.
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Copyright 2009 – Indian Journal of Cancer
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