Bulletin of the World Health Organization,

Sept. 2011;89:640–647

Impact Factor 5.3

Centre for Community MedicineCentre for Community MedicineAll India Institute of Medical Sciences, New DelhiAll India Institute of Medical Sciences, New Delhi

Cancer Registration and its Challenges in India25/07/2014

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Presenter Dr. Priyamadhaba Behera

PreceptorDr Archana

References

• http://www.ncrpindia.org• http://www.hbcrindia.org• http://www.pbcrindia.org• http://www.canceratlasindia.org• NCRP-Three-Year Report of Population Based Cancer

Registries 2009-2011 • NCRP-Consolidated Report of Hospital Based Cancer Registries

2007-2011• Time Trends in Cancer Incidence Rates 1982-2010• Jensen O. M. et al. (eds). Cancer Registration, Principles and

Methods No. 95 (IARC, Lyon, 1991)2/ 38

Outlines of presentation

• Introduction• National Cancer Registry Programme• Population Based Cancer Registry• Hospital Based Cancer Registry• Atlas of Cancer in India• Critical appraisal

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Introduction

• Systemic collection of data on the occurrence and characteristic of neoplasm (Mclennan et al 1978)

• Cancer registration is central to national cancer control programme (Muir, C.S. 1985)

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Introduction

• Worldwide-14.1 million new cases and 8.2 million cancer-related deaths in 20121

• By 2030 new cancer cases will increase to 21.7 million, and the cancer-related deaths to 13 million globally

• 13 million of the new cancer cases and 9 million of the deaths will occur in less developed regions

• 2.5 million cancer cases and 0.7 million new cases/year in India2

1.GLOBAL INITIATIVE FOR CANCER REGISTRY DEVELOPMENT 2. http://nihfw.nic.in/ndc-nihfw/html/Programmes/NationalCancerControlProgramme.htm 5/ 38

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Epidemiologic principles lay the foundations for evidence based scientific cancer research, determining risk factors, assessing control measures

Introduction Continued

• Extraordinary resources of information for clinicians, researchers, scientists, policy makers, and the public in our fight against cancer1

• Identifying High-Risk Groups• Increasing Screening in Underserved Areas• Investigating Possible Cancer Causes• Evaluating patterns of clinical care

Das A et al “Cancer registry databases: an overview of techniques of statistical analysis and impact on cancer epidemiology.Methods”. Mol Biol. 2009;471:31-49. 7/ 38

8/ 38.GLOBAL INITIATIVE FOR CANCER REGISTRY DEVELOPMENT

History of cancer registration in India

• Until 1964- information on cancer occurrence in India was available from surveys

• Initiation of population based cancer registries

Bombay in 1964 Pune in 1973 Aurangabad in 1978 Ahmedabad & Nagpur in 1980

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National Cancer Registry Programme

• Commenced by ICMR with a network of cancer registries across the country in December 19812

• Started with three PBCR -Bangalore, Chennai and Mumbai and three HBCR -Chandigarh, Dibrugarh and Thiruvananthapuram

• Now there are 28 PBCR and 7 HBCR sites in India

2.http://www.ncrpindia.org

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National Cancer Registry Programme Continued

Objectives of this programme

• To generate reliable data on the magnitude and patterns of cancer

• Undertake epidemiological studies based on results of registry data

• Help in designing, planning, monitoring and evaluation of cancer control activities under the National Cancer Control Programme (NCCP)

• Develop training programmes in cancer registration and epidemiology

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National Cancer Registry Programme Continued

• Steering Committee and a Monitoring Committee- meets periodically to oversee and guide –functioning

• A review meeting is held annually -Principal Investigators and staff of the registries present results and participate in the discussions-preceded by a workshop

• Cancer registration in India is active• Death certificates are also scrutinized from the

municipal corporation units

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National Cancer Registry Programme Continued

• Information collected on a core form -subsequently entered into a computer

• Use modern advances in electronic information technology (enter the checking of the data, verification of duplicates and matching mortality and incidence records)

• Electronic processing of data -tried out in some registries

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Population Based Cancer Registries

• Basic thrust of a PBCR is cancer in community • PBCR provides - data on incidence and mortality (also

variation in incidence and mortality)• Three new centers Patiala, Naharalagun,Pasighat has

started • Good PBCR requires Meticulous planning Cooperation from medical institutes Dedicated personal and adequate funding

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Population Based Cancer Registries Continued

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Population Based Cancer Registries Continued

• Data collection-FacilitiesClinician and pathologistDeath certificate

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Population Based Cancer Registries ContinuedEssential variables1

• Personal identification (names (in full) and/or unique • Sex• Date of birth or age• Address (usual residence)• Ethnic group (when the population consists of two or more

groups)• Most valid basis of diagnosis (enables cases to be registered

with a non-histological diagnosis)• Topography (site) of primary cancer• Tumour morphology (histology)• Tumour behaviour (benign, uncertain, in situ or malignant)• Source of information

1.Jensen O. M. et al. (eds). Cancer Registration, Principles and Methods No. 95 (IARC, Lyon, 1991).18/ 38

Population Based Cancer Registries Continued

Recommended variables1

• Date of last contact• Status at last contact (at least dead or alive)• Stage or extent of disease at diagnosis• Initial treatment

1.Jensen O. M. et al. (eds). Cancer Registration, Principles and Methods No. 95 (IARC, Lyon, 1991).

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Flow chart showing working of Delhi cancer registrySources

Radiotherapy Deptt. Pathology Deptt.Medical Record Deptt. Vital/Stat. NDMC/MCD

ResidentName, Age, Sex,

Treat.Topo,Morph. &

Add.

NR NR NRName, Age Sex, Topogrphy, Morphology

(App. 40,000)

Arranged Alpha. Arranged Alpha.Arranged Alpha. Arranged Dictio.

Matching

Coding

Data Entry

ResidentName, Age, Sex, Treatment

ICD.9 or ICD.10 & Add.

ResidentName, Age, Sex,

casuse of death & Add.

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Data Entry

Sorting of data by Sex, Name, Address & disease

wise

Removing of duplicates within the current year &

previous years

Estimation & standardization of population with world

population

Generating tables, calculating of CR, ASR, AAR, for Morb. & Mort.

Data

Report Writing

Flow chart showing working of Delhi cancer registry (Cont….)

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Hospital Based Cancer Registries

• The primary purpose -to contribute to patient care by providing readily accessible information on the patients

• Data - used for clinical research and for epidemiological purposes

• Within the hospital, a registry - integral part of the hospital’s cancer programme or health care delivery system

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Hospital Based Cancer Registries Continued

Objectives (Maclennan et al, 1978; Young, J.L. 1991) GENERAL:

-Assess Patient Care

-Participate in Clinical Research to Evaluate Therapy -Provide an idea of the patterns of cancer in the area -Help plan hospital facilities

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Hospital Based Cancer RegistriesContinued

• Data collection is done by the individual registries using a standardized common core form

• The information of patient Identifying and demographic information Details of diagnosis the clinical stage of the disease Broad type of treatment instituted

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Development of an Atlas of Cancer in India

• A major advance for using Information Technology in Medicine

• Web-based design and approach with on-line transmission

• Unlike the working of PBCRs, no systematic attempt was made to actively visit every diagnostic and treatment centre

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Development of an Atlas of Cancer in India

•Strengthening of departments of pathology Providing orientation/ training in cancer registration

• Cost-effective

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Data entry screen from Cancer Atlas website

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Critical appraisal-1

• Coverage of population based cancer registry (only 7.5%) in India is low1

• Cancer Registries covering 21% of the world population2

• Less in rural (2 wholly rural) and tribal (0) area

1.NCRP-Three-Year Report of Population Based Cancer Registries 2009-2011 2.Parkin DM.The evolution of the population-based cancer registry.Nat Rev Cancer.2006 Aug;6(8):603-12

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Critical appraisal -2

• Quality check. Few indicators of quality check are still far from good quality data

Age unknownUnknown duration of stayMicroscopic verification Clinical extent of disease before treatmentUnspecified site/subsiteUnspecified histology

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Critical appraisal -3

• Linkage of various data (patient level, local level and national level) needs to be improved

e.g English National Cancer Online Registration Environment (EnCORE)

• Real time data entry

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English National Cancer Online Registration Environment (EnCORE)

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English National Cancer Online Registration Environment (EnCORE)

Are patients following local treatment guidelines? 33/ 38

Critical appraisal -4

• Shortage of manpower• Interviewing the patient becoming difficult

due to time convience• Lacking of ICD proper coding in many hospitals• Laborious and time-consuming process for

going through all records and death certificate• New Private hospitals providing soft copy but

not hard copy of patient

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Critical appraisal -5

• Numerator in PBCR, is questionableUnder-reporting is commonFacilities/Clinician and pathologist Depends upon the health care seeking

behaviourDeath certificateQuality and maintenance of death certificate

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Critical appraisal -6

Method Cost/case registration (in Rupees)

PBCRs of the ICMR in Urban area

350

PBCRs of the ICMR in Rural area

4500

Cancer Atlas Project 24

Cost-effectiveness

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Critical appraisal -7

• Co-ordination with District Cancer Control Programme may be vital

PHC,CHC,

Regional cancer centre (19)

Wings of cancer control (241)-helps to bridge geographical barrier

District hospital CHC PHC

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Critical appraisal -8

Reach at primary levelDo we really need a cancer registry to reach

primary level?Histopathology and staging of cancer-tertiary

care hospital

• Role of ASHA, ANM, information assistant• Data quality, duplication of data, increasing

work burden will be a issue38/ 38

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THANK YOU

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Standard

Completeness of Case Ascer-tainment

Records Passing Edits*

Death Certificate

Only

Records Missing

Age

Records Missing

Sex

Records Missing

Race

Months After End

of Diagnosis

Year

National Data Quality

Standard≥95% ≥99% ≤3.0% ≤2.0% ≤2.0% ≤3.0% 23–24

Advanced National

Data Quality Standard

≥90% ≥97% Not applicable ≤3.0% ≤3.0% ≤5.0% 12–13

USCS Publication Standard

≥90% ≥97% ≤5.0% ≤3.0% ≤3.0% ≤5.0% 23–24

Comparison of NPCR Program Standards (USA)

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Evolution of NCCP 1975-76 National Cancer Control Programme was launched with priorities given for equipping the premier cancer hospital/institutions. Central assistance at the rate of Rs.2.50 lakhs was given to each institution for purchase of cobalt machines. 1984-85 The strategy was revised and stress was laid on primary prevention and early detection of cancer cases. 1990-91 District Cancer Control Programme was started in selected districts (near the medical college hospitals). 2000-01 Modified District Cancer Control programme initiated. 2004 Evaluation of NCCP was done by National Institute of Health & Family Welfare, New Delhi. 2005 The programme was further revised after evaluation.

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