What Success Looks Like: India, Dec. 2010

Initiation of a Comprehensive Cervical Cancer Prevention Program in South India

Rhoda Nussbaum, M.D.

December 2010

In August of 2009, a team consisting of two doctors and 2 lay volunteers from PINCC (Prevention International: No Cervical Cancer) came to Puttaparthi, a town northeast of Bangalore, to bring their programme to the Sri Sathya Sai Mobile Hospital. PINCC is a small NGO based in California whose mission is to train health care providers in low tech, low cost, and proven to be effective cervical cancer screening and treatment procedures. PINCC works in countries with the highest cervical cancer rates. After training the local doctors, nurses and support staff to carry out screening and treatment of PRE-cancerous lesions, PINCC donates all the equipment necessary for the clinic or hospital to continue screening and preventing this preventable disease independently.

The Sri Sathya Sai Mobile Hospital is a volunteer multi-specialty medical facility that visits villages in the vicinity of Sri Sathya Sai Baba's ashram in Puttaparthi. Every month, the Mobile Hospital returns to the same villages, visiting 12 different villages each day for the first 12 days of the month. A large bus has been converted to a radiology suite with capacity to do sonography as well as x-ray examinations. The bus also contains a clinical laboratory for collection and analysis of laboratory tests. But the Mobile Hospital consists of much more than this remarkable physical resource. Fifteen to twenty or more physicians from all over the state of Andhra Pradesh come to do voluntary service with the Mobile Hospital. On a typical day, clinics are set up in the village school, using villagers homes for overflow if the school is not big enough to accommodate all the various specialty clinics available. School is closed for the day and the families vacate their houses to allow clinics to be set up for pediatrics, adult medicine, obstetrics/gynecology, general surgery, orthopedics, ophthalmology, dentistry, dermatology, endocrinology, psychiatry or other specialties depending on the volunteers present on a particular day of camp.

Procedures are done including minor surgeries, casting, tooth extractions or fillings, and dentures are made on site. In addition, a full pharmacy is available to give the villagers all needed medications. All this service is provided free of charge. The Sri Sathya Sai Central Trust oversees the operations of the Mobile Hospital, as it does 2 other general hospitals and 2 tertiary care super specialty hospitals located near Sri Sathya Sai Baba's ashrams in Puttaparthi and Bangalore.

The 12 "nodal" villages were selected because of their proximity to surrounding villages. In this way, more than 500 villages are served by the Mobile Hospital and approximately 250,000 people who would otherwise have no or limited access to medical care are receiving state of the art care at their doorsteps without cost.

Components of a population based cancer prevention program:

The Sri Sathya Sai Mobile Hospital seemed to be the ideal infrastructure in which to initiate a cervical cancer screening program. When all facets of this program were established, a population based cancer prevention program would be in place and cervical cancer morbidity and mortality will be seen to decrease during the next 10 to 20 years in the population served by the Mobile Hospital.

The PINCC team spent 12 days with the Mobile Hospital in August 2009 and again in December of 2009, 4 days in August 2010, and 5 days in December 2010.

There are six components of a population based program that must be in place to decrease morbidity and mortality from a disease:

The PINCC team spent 12 days with the Mobile Hospital in August 2009 and again in December of 2009, 4 days in August 2010, and 5 days in December 2010.

There are six components of a population based program that must be in place to decrease morbidity and mortality from a disease:

1. Education of the population

2. Education and training of doctors and other health care providers

3. Procurement and care of equipment

4. Documentation

5. Quality control and improvement

6. Community outreach to assure all people at risk receive screening

In India, cervical cancer screening is rarely practiced. A World Health Organization report from 2008 found the screening rate for the entire population of women to be 2.6% -- 4.9% for urban and 2.3% for rural populations. Gynecologists generally practice "opportunistic" screening. That is, they only send a Pap smear or do visual screening when the women complains of discharge, bleeding or her cervix looks "unhealthy".

Since cervical cancer has a long pre-cancerous stage when it is curable, cervical cancer death and suffering can only be diminished if screening is carried out on asymptomatic women of the appropriate age with wide spread screening that includes as much of the population as possible.

Screening rates in India must increase from below 5% of women if the current annual cervical cancer incidence of 23.5 per100,000 and mortality rate of 12.8 per 100,000 are going to be decreased. In 2008,134,420 cases invasive cervical cancer were diagnosed in India and 72,825 Indian women died of this preventable disease.

Training of Doctors

The PINCC team of volunteer physicians and support staff from the United States uses a combination of didactic and clinical education of physicians as well as instruction in the proper use and care of all equipment that has been donated by PINCC to the Mobile Hospital. 20 Gynecologists were trained during the first and second training sessions (2009) that lasted 12 days each. 12 doctors attended the third and forth trainings (2010), which were 4 and 5 days in length.

Two of these trainees attend the Mobile Hospital camp on a regular basis, have each received four separate training experiences, and have been certified to perform and teach VIA, Cryosurgery and LEEP surgery. Two additional doctors are certified to perform and teach VIA and Cryosurgery, but need additional supervised experience with LEEP surgery to be certified to perform this procedure independently and to be able to instruct others. The remaining doctors attended one or more trainings and perform VIA and Cryosurgery when they are working in the Mobile Hospital. Some have incorporated VIA and Cryosurgery into their own practices. There are now sufficient numbers of trained medical staff to assure the full range of services from screening to treatment of advanced pre-cancerous disease everyday that the Sri Sathya Sai Mobile Hospital visits villages. Training and certification of more Gynecologists can now continue independently of visits by the PINCC team, as more trainees are ready to train others.

Education of Patients

Before the first PINCC training visit, education of the villagers began with talks about cervical cancer and the coming availability of a simple test to screen for and prevent it. This education and encouragement of women to come to the Gynecology clinic for screening continues at each village. Initially, only women with symptoms of discharge or bleeding were being screened; but over time, with continued education and with one woman telling her friends about the simple test, women are coming for the cancer screening test without any symptoms.

It is estimated that 6000 to 7000 people are seen by the SSS Mobile Hospital staff each month. Each month, the number of cervical cancer screening tests has increased and now at least 20 exams are done for women with symptoms, and 20 more for asymptomatic women, on each day of camp. The concept of preventive screening is now understood and is being accepted by both the villagers and the doctors.

Documentation

On PINCC's first visit in August 2009, no medical records were being kept by the Mobile Hospital. Doctors wrote their findings on a small slip of paper that was given to the patient. Since the follow up of abnormal exams, as well as a system for informing patient of test results needs to be part of a successful cervical cancer prevention program, a more robust documentation system needed to be developed.

There is a great deal of trust between the villagers and the Mobile Hospital staff. Because women return for results and follow up exams or procedures, it was decided that a "see and treat" methodology would not be instituted in the Mobile Hospital, as is usually the case for training sites in Africa and Latin America. Today, if a woman has an abnormal finding in the VIA exam, a biopsy is taken and the woman returns the following month, when the mobile hospital returns, to be informed of the results and what treatment and follow up, if any, is needed to prevent her from possibly developing cancer in the future.

Since different Gynecologists attend the SSS Mobile Hospital Gynecology clinic each month, it is important for records of previous exams, results of cytology and histopathology specimens, and the treatment plan formulated by the initial examining doctor, to be available when the women returns for her results. It is also important for the Mobile Hospital to have a complete list of the women who are told to return, so that none will be lost to follow up. A computerized recording system has recently been developed, examination forms have been printed; and now, in addition to each patient receiving a piece of paper that she keeps for her own records, the Mobile Hospital has ready access to all necessary documentation when the woman returns. Eventually, it is expected that all this information will be available on line, so that individual doctors can retrieve biopsy data on patients they examined the previous months, even if another doctor will see the woman when she returns.

Quality Control and Improvement

After the first two PINCC trainings, all cytology and histopathology results were reviewed by a PINCC doctor and treatment or follow up recommendations were sent back to the Director of the SSSMobile Hospital. Since the third PINCC visit, results and follow up are coordinated by the manager of the Gynecology clinic, another volunteer with great skill in all aspects of the cervical cancer prevention program. She reviews the histopathology results with one of the two Gynecologists who has been fully trained and certified. She is aware of any missing or mislabeled specimens. She has responsibility to assure that no woman is lost to follow up.

Initially, there were significant discrepancies noted between the trainee doctor's clinical impression of pre-cancerous disease as a result of VIA and the Pathologists report of biopsy. Education of Pathologists was also needed and the PINCC team had communications directly with one of the volunteer pathologists who accepted and read specimens collected from the Mobile Hospital. It was decided that any case with more than one degree of difference between the clinical impression and the histopathology result would be sent to a different pathologist for second opinion. For example, if the trainee doctor's clinical impression of VIA was CIN 3 but the biopsy was chronic cervicitis, the specimen was sent to a second pathologist. If greater than one degree of discrepancy between a cervical biopsy and follow up LEEP specimen was found, a second opinion was also sought.

During the 4th PINCC training session, one of the volunteer pathologists who was receiving specimens attended the camp. He was able to see and learn about VIA and cryosurgery, and watch LEEP surgeries being done. He was able to teach the Gynecologists about Pap smear preparation and it was decided that all LEEP specimens would be sent to him for reading. He also agreed to serve as a consultant to other Pathologists concerning the cervical cancer prevention program.

Summary records for each month are being collected so that trends can be appreciated and modifications to the program can be made as needed.

Community Outreach

In order to see a significant decrease in incidence and death from cervical cancer over time, it will be necessary to define the population at risk. The Mobile Hospital plans to collect the names of the village women above 25 years of age and to develop a plan to assure that each woman is educated about, and offered screening, for cervical cancer. Since this cancer has a long latency period of 10 to 20 years before becoming invasive, it is expected that the incidence and mortality from this disease will decrease. Cancer statistics and registries in the area will be useful in quantifying this progress.

What Success Feels Like

As Medical Director for PINCC-India, I have seen constant improvement in the Gynecologists' levels of knowledge and skills. I have seen the development of a program with key services from support staff as well as from Information Technology. I have seen persistent leadership from the Director of the Mobile Hospital, the manager of the Gynecology Clinic and from the two Gynecologists who have been fully certified and put in charge of this program. I have seen a growing awareness in the women of the villages that cervical cancer is a preventable disease. I have seen the trust the villagers place in the SSS Mobile Hospital resulting in their encouraging family and friend to go for screening.

Yet, more work needs to be done. The village education and outreach components of the program will need to grow so that the entire population at risk has access to screening and treatment of pre-cancerous disease. Training of more doctors to screen larger numbers of women will have to occur. Incorporation of medical advances such as HPV DNA testing and vaccination with the HPV vaccine will need to take place as these new technologies become available and affordable. Collection of public health data about the incidence and mortality from cervical cancer will need to be acquired.

I have full confidence that this fledgling population prevention program, just two years in existence, will significantly reductions cervical cancer in the villages where screening is available within 10 years. I have confidence that the women in the villages served by the SSS Mobile Hospital will be unique in experiencing a markedly decreased incidence and death rate from this disease compared to women in surrounding areas. Being a part of this project has felt miraculous, rewarding, exciting and energizing. PINCC has learned much from working with the Sri Sathya Sai Mobile Hospital and hopes to be able to help initiate cervical cancer prevention programs in other parts of India.

It is estimated that 6000 to 7000 people are seen by the SSS Mobile Hospital staff each month. Each month, the number of cervical cancer screening tests has increased and now at least 20 exams are done for women with symptoms, and 20 more for asymptomatic women, on each day of camp. The concept of preventive screening is now understood and is being accepted by both the villagers and the doctors.

Documentation

On PINCC's first visit in August 2009, no medical records were being kept by the Mobile Hospital. Doctors wrote their findings on a small slip of paper that was given to the patient. Since the follow up of abnormal exams, as well as a system for informing patient of test results needs to be part of a successful cervical cancer prevention program, a more robust documentation system needed to be developed.

There is a great deal of trust between the villagers and the Mobile Hospital staff. Because women return for results and follow up exams or procedures, it was decided that a "see and treat" methodology would not be instituted in the Mobile Hospital, as is usually the case for training sites in Africa and Latin America. Today, if a woman has an abnormal finding in the VIA exam, a biopsy is taken and the woman returns the following month, when the mobile hospital returns, to be informed of the results and what treatment and follow up, if any, is needed to prevent her from possibly developing cancer in the future.

Since different Gynecologists attend the SSS Mobile Hospital Gynecology clinic each month, it is important for records of previous exams, results of cytology and histopathology specimens, and the treatment plan formulated by the initial examining doctor, to be available when the women returns for her results. It is also important for the Mobile Hospital to have a complete list of the women who are told to return, so that none will be lost to follow up. A computerized recording system has recently been developed, examination forms have been printed; and now, in addition to each patient receiving a piece of paper that she keeps for her own records, the Mobile Hospital has ready access to all necessary documentation when the woman returns. Eventually, it is expected that all this information will be available on line, so that individual doctors can retrieve biopsy data on patients they examined the previous months, even if another doctor will see the woman when she returns.

Quality Control and Improvement

After the first two PINCC trainings, all cytology and histopathology results were reviewed by a PINCC doctor and treatment or follow up recommendations were sent back to the Director of the SSSMobile Hospital. Since the third PINCC visit, results and follow up are coordinated by the manager of the Gynecology clinic, another volunteer with great skill in all aspects of the cervical cancer prevention program. She reviews the histopathology results with one of the two Gynecologists who has been fully trained and certified. She is aware of any missing or mislabeled specimens. She has responsibility to assure that no woman is lost to follow up.

Initially, there were significant discrepancies noted between the trainee doctor's clinical impression of pre-cancerous disease as a result of VIA and the Pathologists report of biopsy. Education of Pathologists was also needed and the PINCC team had communications directly with one of the volunteer pathologists who accepted and read specimens collected from the Mobile Hospital. It was decided that any case with more than one degree of difference between the clinical impression and the histopathology result would be sent to a different pathologist for second opinion. For example, if the trainee doctor's clinical impression of VIA was CIN 3 but the biopsy was chronic cervicitis, the specimen was sent to a second pathologist. If greater than one degree of discrepancy between a cervical biopsy and follow up LEEP specimen was found, a second opinion was also sought.

During the 4th PINCC training session, one of the volunteer pathologists who was receiving specimens attended the camp. He was able to see and learn about VIA and cryosurgery, and watch LEEP surgeries being done. He was able to teach the Gynecologists about Pap smear preparation and it was decided that all LEEP specimens would be sent to him for reading. He also agreed to serve as a consultant to other Pathologists concerning the cervical cancer prevention program.

Summary records for each month are being collected so that trends can be appreciated and modifications to the program can be made as needed.

Community Outreach

In order to see a significant decrease in incidence and death from cervical cancer over time, it will be necessary to define the population at risk. The Mobile Hospital plans to collect the names of the village women above 25 years of age and to develop a plan to assure that each woman is educated about, and offered screening, for cervical cancer. Since this cancer has a long latency period of 10 to 20 years before becoming invasive, it is expected that the incidence and mortality from this disease will decrease. Cancer statistics and registries in the area will be useful in quantifying this progress.

What Success Feels Like

As Medical Director for PINCC-India, I have seen constant improvement in the Gynecologists' levels of knowledge and skills. I have seen the development of a program with key services from support staff as well as from Information Technology. I have seen persistent leadership from the Director of the Mobile Hospital, the manager of the Gynecology Clinic and from the two Gynecologists who have been fully certified and put in charge of this program. I have seen a growing awareness in the women of the villages that cervical cancer is a preventable disease. I have seen the trust the villagers place in the SSS Mobile Hospital resulting in their encouraging family and friend to go for screening.

Yet, more work needs to be done. The village education and outreach components of the program will need to grow so that the entire population at risk has access to screening and treatment of pre-cancerous disease. Training of more doctors to screen larger numbers of women will have to occur. Incorporation of medical advances such as HPV DNA testing and vaccination with the HPV vaccine will need to take place as these new technologies become available and affordable. Collection of public health data about the incidence and mortality from cervical cancer will need to be acquired.

I have full confidence that this fledgling population prevention program, just two years in existence, will significantly reductions cervical cancer in the villages where screening is available within 10 years. I have confidence that the women in the villages served by the SSS Mobile Hospital will be unique in experiencing a markedly decreased incidence and death rate from this disease compared to women in surrounding areas. Being a part of this project has felt miraculous, rewarding, exciting and energizing. PINCC has learned much from working with the Sri Sathya Sai Mobile Hospital and hopes to be able to help initiate cervical cancer prevention programs in other parts of India.