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About
Patterns of Care and Survival Studies...
Background
The Indian Council of Medical Research initiated a network of cancer registries
across the country under the National Cancer Registry Programme (NCRP) in December
1981. This move followed the recognition that there was an urgent need for strengthening
the existing cancer registries and organization of new cancer registries in different
regions of the country. The programme was commenced with the following objectives:
1. To generate reliable data on the magnitude and patterns of cancer;
2. To undertake epidemiologic studies in the form of case control or cohort studies
based on observations of registry
data;
3. Provide research base for developing appropriate strategies to aid in National
Cancer Control Programme; this would
be in the form of planning, monitoring and
evaluation of activities under this programme;
4. Develop human resource in cancer registration and epidemiology.
Data collection commenced from 1 January 1982 in the population based cancer registries
(PBCRs) at Bangalore, Chennai and Mumbai, and also in the hospital based cancer
registries (HBCRs) at Chandigarh, Dibrugarh and Thiruvananthapuram. The successful
execution of the WHO project on ‘Development of an Atlas of Cancer in India’ in
2002 became the forerunner in setting up PBCRs across all the eight North East states.
The NCRP is assisted by Steering and Monitoring Committees that meet periodically
to oversee and guide its functioning. A review meeting preceded by a workshop is
held annually where the Principal Investigators and staff of the registries, under
the NCRP, present data and participate in the discussions. The XVII Annual Review
Meeting is being held on 3 and 4 November 2011 at Dr B. Borooah Cancer Institute,
Guwahati. The NCRP data over the years has constituted a sound scientific and research
data base for over 350 research publications in peer reviewed journals both nationally
and internationally.
The cancer registry is central to any rational programme on cancer control. To this
end the registries under the NCRP have provided baseline parameters with data of
high quality and scientific validity. Systematic collation of cancer information
albeit in a few centers, has given pointers to the burden and patterns of cancers
amenable to cancer control measures. The population based survival studies conducted
by the registries, for the first time in the context of a developing country have
made known additional factors in the form of age and stage specific survival and
mortality. Based on this important information, the Government of India formulated
the National Cancer Control Programme (NCCP) with the following main objectives:
1. Primary Prevention of Tobacco Related Cancers;
2. Early Detection and Treatment of cancer of the uterine cervix;
3. Distribution and extension of cancer management and control services through
regional cancer centres, medical and
dental colleges.
The Hospital Based Cancer Registries (HBCRs) have given an assessment of the magnitude
and patterns of cancer in the region being catered by the centre/registry. A very
high proportion (75-80%) of clinically advanced disease is seen when the patients
first attend for treatment leading to poor survival rates. The HBCRs have also contributed
to the Population Based Cancer Registry (PBCR) of the area and conducted several
case control studies. They have helped the institutes to know the exact status of
patient management with reference to proportion that receive cancer directed treatment
and those that do not either at the reporting institution or elsewhere. Assessment
of patient care in terms of clinical stage and treatment outcome has so far not
been possible as additional resources are required to ensure that this is available
in all registered and treated patients.
The WHO project on cancer atlas has provided a picture of cancer in areas not covered
by the NCRP. It has also shown the immense potential of electronic information technology
as a tool for information gathering in cancer patients across the country in a cost-effective
way.
Cancer of the cervix, breast and head & neck cancers are major leading sites
of cancer in our country and are amenable to early detection and control measures.
Stage and treatment based survival is a prime requisite for evaluation of cancer
control activities.
Workshops on each of these sites of cancer were held to arrive at a consensus on
the core information to be collected, for each of these sites and the plan and strategy
to be adopted for abstracting/recording details of clinical stage and follow-up.
A common agreed standardized form both as printed hard copy and on the web-site
along the lines of the cancer atlas project has been finalised. They would pursue
active follow-up of all registered treated patients in their respective institutions.
Methods
The participating centres would be the HBCRs and other interested centres
who find it feasible to execute the project. They will be strengthened with a personal
computer with facility for link through internet to the main NCRP web-site. Software
programmes developed by the Coordinating Unit will aid the departmental staff to
enter the required patient information at registration, before, during and after
treatment as well as at periodic follow-up. This will be done on a regular routine
schedule, so that the Coordinating Unit can assess and monitor the information received.
Expertise for monitoring, co-ordinating, evaluating, analysing, and reporting results
in a scientifically valid format is available at the Co-ordinating Unit of the NCRP.
The basic computer programming both off-line and web-based has been streamlined
and established at the unit, by virtue of the NCRP in general and the project on
“Development of an Atlas of Cancer” in particular.
Methodology
The system of electronic capture of information that
has been established with the project on “Development of an Atlas of Cancer in India”
would constitute the framework on which the capture of clinical information would
be linked. The basic identifying and diagnostic information is on all cancers diagnosed
through microscopy in the departments of pathology in 99 medical colleges, regional
cancer centres and some major private hospitals is being received on a daily basis.
Software programmes have been developed to obtain the information through a web-site
(canceratlasindia.org) and a server is in place. The programme on the form has been
so devised that unlike the form in the cancer atlas the present form can be retrieved
for periodic entries on treatment, follow-up information etc. This can be done without
affecting the basic core identifying and diagnostic information. Software for alerting
on the list of patients who need to be followed up at different intervals and /or
on their appointment dates will be developed. Some on-line checks on the major discrepancies
will be introduced, but essentially the checks will be done off-line. Software programmes
will also be developed for generating basic tables and reports.
Data Collection Tool
A common standardized agreed ‘Patient Information
Form’ specifically for cancer breast, cancer cervix and Head & neck cancers
(copies enclosed) and the same form is available on the web-site (hbccrindia.org)
along the lines of the cancer atlas project. They would pursue active follow-up
of all registered treated patients in their respective institutions.
Data Analysis, Dissemination of Results
The analysis, preparation
of report and dissemination of results will be done by the Coordinating Unit of
NCRP.
Evaluation and Follow Up
Methods of Evaluation to assess effectiveness
Centres will be registering
their cases on-line as soon as treatment is commenced in any given case. From then
on electronic information technology will be used to monitor the progress through
data received on a day-to-day basis.
Methods of Evaluation to assess
long term impact
The validity
of clinical stage and treatment parameters recorded and the proportion of patients
returning for regular follow-ups for re-evaluation of disease status in each centre
will constitute quantitative parameters for determining long term impact of the
activity.
Follow-up actions
All registered patients will be followed up
for disease status and co-morbid conditions for a minimum period of five years.
Technical Staff Support
Expertise for monitoring, coordinating, evaluating, analyzing, and reporting results
in a scientifically valid format is available at the Coordinating Unit of the NCRP.
The basic computer programming both off-line and web-based has been streamlined
and established at the unit, by virtue of the NCRP in general and the project on
“Development of an Atlas of Cancer” in particular.
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