We need a uniform data collection mechanism for childhood cancer: Dr Girish Chinnaswamy
In an interview with ETHealthworld, Dr Girish Chinnaswamy, Associate Professor (Pediatric Oncology), Tata Memorial Hospital, Mumbai, talks on why pediatric oncology has still not developed as a specialty in India. Edited excerpts:
Where does India stand in Pediatric Oncology when compared with the global scenario?
Pediatric Oncology is a relatively new field in India and it is an upcoming specialty. The number of pediatric oncologists has only recently increased substantially. Bulks of pediatric oncologists are trained in the west because substantial oncology training was not existent in India till recently.
The pediatric oncology training for doctors started as a short one year and two year fellowship programmes but they were not enough both in terms of number and depth of training which was done; hence the Medical Council of India has approved courses to start pediatric oncology three year DM programme which is the highest level of training you can get in India. There are two centres that provide that kind of training (Mumbai-Tata Memorial Hospital and Regional Cancer Centre based in Trivandrum). There is also a similar training programme which exists in Chandigarh.
We need to escalate this programme and get more pediatric oncologists trained here so that we can take care of huge number of children with cancer that are there in our country. About 20 percent of the childhood cancers are in India but we do not have 20 percent of the paediatric oncologists of the world in this country.
The whole of United Kingdom sees about 1500 childhood cancer every year and for that they have 125 pediatric oncologists whereas India sees 50,000 childhood cancer per year and for that we do not have more than 60 pediatric oncologists.
Where does India stand in Pediatric Oncology when compared with the global scenario?
Pediatric Oncology is a relatively new field in India and it is an upcoming specialty. The number of pediatric oncologists has only recently increased substantially. Bulks of pediatric oncologists are trained in the west because substantial oncology training was not existent in India till recently.
The pediatric oncology training for doctors started as a short one year and two year fellowship programmes but they were not enough both in terms of number and depth of training which was done; hence the Medical Council of India has approved courses to start pediatric oncology three year DM programme which is the highest level of training you can get in India. There are two centres that provide that kind of training (Mumbai-Tata Memorial Hospital and Regional Cancer Centre based in Trivandrum). There is also a similar training programme which exists in Chandigarh.
We need to escalate this programme and get more pediatric oncologists trained here so that we can take care of huge number of children with cancer that are there in our country. About 20 percent of the childhood cancers are in India but we do not have 20 percent of the paediatric oncologists of the world in this country.
The whole of United Kingdom sees about 1500 childhood cancer every year and for that they have 125 pediatric oncologists whereas India sees 50,000 childhood cancer per year and for that we do not have more than 60 pediatric oncologists.
What are the challenges that you see?
One of the major problems in India is that a lot of the tumours or diseases that we see in India come to us a few weeks later than what would happen in the west. This is because there is not a very high level of sensitivity among doctors towards childhood cancer both at the doctor level and at the health worker level and for that reason patients tend to be diagnosed a bit later than the west.
A significant problem is that we do not have an integrated referral system of doctors as patients have the liberty in India to move from one doctor to another and it actually becomes difficult for the doctor to make the diagnoses. This allows the cancer to keep multiplying because we have not started treatment early enough.
When we compare the disease of the west to India the tumour volume is much larger, the disease is much more advanced in India compared to what happens in the west. This is just because there is delay in diagnoses and no appropriate referral for the patients to reach here.
We need to focus on educating the community doctors, community health workers and sensitize them about childhood cancer because it has got excellent outcomes if picked up and treated well. More than 70-80 percent childhood cancer would get treated on the long term. We also see that kind of outcomes in select pockets in India where a referral has been made and they reach the appropriate centres but if you look at the country as a whole lot of childhood diseases that we see are much more advanced in India than what it is in the west just because of delay in diagnoses and referral to the treatment centre.
How do you plan to overcome the issues that are being faced?
Childhood cancer treatment guidelines were first more developed in the west especially in Europe and North America before it came to India. A lot of the doctors had trained in the west and this is a relatively new specialty so a lot of the treatment protocols that were used were actually imported from the west and delivered in India.
The problem of doing that is different doctors have trained in different centres in the west, there is a large heterogeneity in the type of treatment protocols which are being used and that actually makes it a bit complicated for us. It gets very difficult to transfer the child from one treatment protocol to another. So as it stands now we do not have uniform treatment guidelines and protocols for childhood cancer in the country. If all the patients were treated on the same protocol we would know exactly how this protocol would have worked in an Indian setting compared to a western setting and that is a problem which we are working on and we hope to address that in a big way in the next 5 to 10 years.
Tell us the role of population based cancer registry in better diagnosis and treatment?
We do not have a large population based registry looking at childhood cancer in India. All the data that we have on childhood cancer in India is coming from hospitals where children are being treated and we have noticed the pattern of disease, the type of childhood cancer that we see in India is pretty much similar to what we see in the west except a few tumours.
There are minor changes in developing and developed countries in the type of cancer that we see otherwise unlike adults these tumours are not diseases of lifestyle and they are genetic disorders. The pattern that we see in the data which is reported from these hospitals is very much similar to what we see in the west. Since we do not have a uniform data collection mechanism for childhood cancer in place, we are relaying on this hospital registry and another which is run by Indian Council of Medical Research to provide data on what is the incidence or stage of childhood cancer that we see in India. How advance are they? How early are they picked up? What are the outcomes that we are seeing?
We need to put more effort into this and develop a good registry so that we are able to generate Indian data on how many cancers we see per year what are the outcomes and are they different from the outcomes that we see in the west.
What are the advancements made in the research of childhood cancer?
Research and treatment of cancer goes hand in hand because it is a disease which does not have great outcomes many times. Research must be born out of the problems that we see in our local area. We have to identify the problems that we see in India and research questions have to come from our day to day practise.
We have identified areas that we need to work on. Children come a lot with malnutrition and the guidelines which are applicable in the developed world are not applicable here because the toxicity of the treatment becomes very high. We have to do research on how to handle children with malnutrition who have got cancer, how do we adjust the treatment doses, how do we adjust the treatment protocol so that we do not lose them because of toxicity of the treatment.
The other challenge is that we cannot afford all the treatment that is there in the west and assume it to be the best treatment in our setting. We have to develop our own protocols and treatment and balance out the cost of treatment versus the outcomes that we see and for that reason we have to do a lot of research in the country to look at what is the best option for our patients especially with the delivery of care in the community.
We can tailor the treatment to what our population needs rather than taking it from the west. So in order to do that we have formed the Indian Pediatric Oncology Group that includes all the pediatric oncologists from the country. We are various committees and subgroups and we meet every six months to look at individual diseases and problems that we face in India, collect data from various hospitals and discuss the tumour in which we are not doing well in India compared to the west and do research on why the patients don’t do well. This way we are designing new research questions and new trials. The main mandate of Indian Pediatric Oncology Group is actually to develop research within India and ask the questions which are relevant for our country.
One of the major problems in India is that a lot of the tumours or diseases that we see in India come to us a few weeks later than what would happen in the west. This is because there is not a very high level of sensitivity among doctors towards childhood cancer both at the doctor level and at the health worker level and for that reason patients tend to be diagnosed a bit later than the west.
A significant problem is that we do not have an integrated referral system of doctors as patients have the liberty in India to move from one doctor to another and it actually becomes difficult for the doctor to make the diagnoses. This allows the cancer to keep multiplying because we have not started treatment early enough.
When we compare the disease of the west to India the tumour volume is much larger, the disease is much more advanced in India compared to what happens in the west. This is just because there is delay in diagnoses and no appropriate referral for the patients to reach here.
We need to focus on educating the community doctors, community health workers and sensitize them about childhood cancer because it has got excellent outcomes if picked up and treated well. More than 70-80 percent childhood cancer would get treated on the long term. We also see that kind of outcomes in select pockets in India where a referral has been made and they reach the appropriate centres but if you look at the country as a whole lot of childhood diseases that we see are much more advanced in India than what it is in the west just because of delay in diagnoses and referral to the treatment centre.
How do you plan to overcome the issues that are being faced?
Childhood cancer treatment guidelines were first more developed in the west especially in Europe and North America before it came to India. A lot of the doctors had trained in the west and this is a relatively new specialty so a lot of the treatment protocols that were used were actually imported from the west and delivered in India.
The problem of doing that is different doctors have trained in different centres in the west, there is a large heterogeneity in the type of treatment protocols which are being used and that actually makes it a bit complicated for us. It gets very difficult to transfer the child from one treatment protocol to another. So as it stands now we do not have uniform treatment guidelines and protocols for childhood cancer in the country. If all the patients were treated on the same protocol we would know exactly how this protocol would have worked in an Indian setting compared to a western setting and that is a problem which we are working on and we hope to address that in a big way in the next 5 to 10 years.
Tell us the role of population based cancer registry in better diagnosis and treatment?
We do not have a large population based registry looking at childhood cancer in India. All the data that we have on childhood cancer in India is coming from hospitals where children are being treated and we have noticed the pattern of disease, the type of childhood cancer that we see in India is pretty much similar to what we see in the west except a few tumours.
There are minor changes in developing and developed countries in the type of cancer that we see otherwise unlike adults these tumours are not diseases of lifestyle and they are genetic disorders. The pattern that we see in the data which is reported from these hospitals is very much similar to what we see in the west. Since we do not have a uniform data collection mechanism for childhood cancer in place, we are relaying on this hospital registry and another which is run by Indian Council of Medical Research to provide data on what is the incidence or stage of childhood cancer that we see in India. How advance are they? How early are they picked up? What are the outcomes that we are seeing?
We need to put more effort into this and develop a good registry so that we are able to generate Indian data on how many cancers we see per year what are the outcomes and are they different from the outcomes that we see in the west.
What are the advancements made in the research of childhood cancer?
Research and treatment of cancer goes hand in hand because it is a disease which does not have great outcomes many times. Research must be born out of the problems that we see in our local area. We have to identify the problems that we see in India and research questions have to come from our day to day practise.
We have identified areas that we need to work on. Children come a lot with malnutrition and the guidelines which are applicable in the developed world are not applicable here because the toxicity of the treatment becomes very high. We have to do research on how to handle children with malnutrition who have got cancer, how do we adjust the treatment doses, how do we adjust the treatment protocol so that we do not lose them because of toxicity of the treatment.
The other challenge is that we cannot afford all the treatment that is there in the west and assume it to be the best treatment in our setting. We have to develop our own protocols and treatment and balance out the cost of treatment versus the outcomes that we see and for that reason we have to do a lot of research in the country to look at what is the best option for our patients especially with the delivery of care in the community.
We can tailor the treatment to what our population needs rather than taking it from the west. So in order to do that we have formed the Indian Pediatric Oncology Group that includes all the pediatric oncologists from the country. We are various committees and subgroups and we meet every six months to look at individual diseases and problems that we face in India, collect data from various hospitals and discuss the tumour in which we are not doing well in India compared to the west and do research on why the patients don’t do well. This way we are designing new research questions and new trials. The main mandate of Indian Pediatric Oncology Group is actually to develop research within India and ask the questions which are relevant for our country.
Source:http://health.economictimes.indiatimes.com/news/industry/we-need-a-uniform-data-collection-mechanism-for-childhood-cancer-dr-girish-chinnaswamy/58866560
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