Cancer registration and its role in

cancer epidemiology and cancer control

Freddie Bray

Deputy Head, Section of Cancer Information

IARC

Dharmais Cancer Hospital · Jakarta · November 2010

Content• Global cancer burden 2008 and 2030

• Population-Based Cancer Registries (PBCRs)

• Key characteristics

• vs. hospital or pathology-based registries

• Role of PBCRs:• Epidemiology

• elucidating the causes of cancer

• Cancer control

• planning national cancer control programmes

• monitoring national cancer control programmes

• evaluating national cancer control programmes

• Availability and quality of PBCRs

• Indonesia

Global cancer burden 2008 and 2030

Cancer registration – a priority for cancer research, prevention and control

• UICC World Cancer Declaration - second target for 2020

• The measurement of the global cancer burden and the impact of

cancer control interventions will have improved significantly

• WHO 2008-2013 Action Plan Global Strategy for the Prevention and Control of Non-communicable Diseases

• Objective 6: To monitor non-communicable diseases and their determinants and evaluate progress at the national, regional and global levels

The Global Burden of Cancer

In 2008, best estimates:

• 12.7 million new cancer cases

• 7.6 million cancer deaths

• 56% of new cancer cases and 63% of deaths in developing regions of the world

Developed vs. Developing

High: 0.8 ≤ HDI <1; Low/Medium: 0.3 ≤ HDI < 0.8 1985

Human Development Index

High: 0.8 ≤ HDI <1; Medium: 0.5 ≤ HDI < 0.8; Low: 0.3 ≤ HDI < 0.5 2007

IARC and American Cancer Society

Female breast cancer

IARC and American Cancer Society

Jha, 2009

Colon cancer, males

Stomach cancer, males

Source: U.N. Population Division 2006

Population ageing and growth by world region 2002-2050

Global impact of cancer burden 2030*

• Approx. 21.4 million new cases will be diagnosed in 2030

• Up 69% from 12.7 million in 2008

• Approx. 13.2 million deaths from cancer will occur in 2030

• Up 72% from 7.6 million in 2008

* Assuming rates in 2008 do not change.

National impact of cancer burden 2030**assuming rates in 2008 do not change

Indonesia: 535 000 cancer cases (est. 292 000 cases in 2008)

Japan: 787 000 cancer cases in 2030

China 4 867 000 cancer cases in 2030

Trends

A steadily increasing proportion of elderly people in the world will result in approximately a 50% increase in new cancer cases over the next 20 years.

If current smoking levels and the adoption of unhealthy lifestyle persist the increase will be even greater

WHO, 2005

Projected deaths by cause and income, 2004 to 2030

0

5

10

15

20

25

30

2004 2015 2030 2004 2015 2030 2004 2015 2030

De

ath

s (

millio

ns

)

High income Middle income Low income

HIV, TB, malaria

Other infectious

Mat//peri/nutritional

CVD

Cancers

Other NCD

Road traffic accidents

Other unintentional

Intentional injuries

WHO GBD 2004

Population-Based Cancer Registries

What is cancer registration?

• Cancer Registry

• The office or institution which is responsible for the collection storage, analysis and interpretation of data on persons with cancer

• Cancer registration

• The process of continuing systematic collection of data on the occurrence, characteristics, and outcome of reportable neoplasms with the purpose of helping to assess and control the impact of malignant disease in the community.

• Population-Based Cancer Registries (PBCRs)

• Collect information on all new cases of cancer in a defined population

• The population covered is usually that of a geographic area

• The main interest is for epidemiology and public health

What is cancer registration?

• Population-Based Cancer Registries

• All cases in a DEFINED population are registered

• True (unbiased) profile of cancer in the community

• incidence, stage distribution, survival, etc.

• Calculation of incidence rates

• if population from which cases come (“population at risk”) is known

- true picture of the difference in risk between population or groups

Other types of registries

• Pathology-Based Cancer Registries

• Collect information from one or more laboratories on histologically-diagnosed cancers

• The population from which the tumour tissue has come is not defined

• Information is of high diagnostic quality - but is difficult to generalize

• Hospital-Based Cancer Registries

• Records all cases of cancer treated in a given hospital

• The population from which the cases come is not defined

• The purpose is to serve the needs of the hospital administration, the hospital's cancer programme

• May not be representative of all cancer cases occurring in the area

Cancer registration methodology

• Clear definition of the catchment population

• Distinguish residents living within the area and those who come from outside

• Availability of reliable population denominators

• Generally available medical care and ready access to medical facilities

• Great majority will come into contact with the health care system at some point in their illness

• Easy access to case-finding sources

• Hospitals, pathology departments death certificates etc.

Difficulties in Low/Medium resource countries

• Lack of resources

• Lack of appropriately-trained staff

• Lack of basic health facilities

• Lack of proper denominators

• Identity of individuals

• Lack of follow-up

Making counting count: cancer registries as a basis for cancer prevention and control

1) Epidemiology• Generating hypotheses of aetiology – geographic and

temporal variations in cancer incidence• Understanding aetiology and evaluating interventions

- case identification, research endpoints e.g. in cohort studies

2) Cancer control programmes• Planning - estimates of cancer burden, targeting

public health interventions • Evaluating – temporal variations in incidence, survival

and mortality

Role of Population-based Cancer Registries –

Epidemiology• Descriptive studies

Cancer Incidence in Five Continents Vol 1 (1966) Introduction

“In the development of knowledge about the cause of a disease, the first and most difficult stage is the search for clues on which hypotheses can be based…one of the most rewarding [avenues] is likely to be that which leads to a comparison of the frequency with which the disease occurs in different communities in different areas and at different times”

Highest national age standardised rates – selected sites

Cancer Country Est. national rate

Est. world avge rate

Lip, oral Papua New Guinea

24.0 3.9

Liver Mongolia 94.4 10.8

Kidney Czech Republic 16.2 3.9

Ovary Latvia 14.6 3.3

Thyroid Rep. of Korea 35.4 3.1

NHL Israel 16.6 5.1

Cancer Incidence in Five Continents: Vol 1 (1966) Introduction

Reliable cancer registries:

• Those able to amass information (diagnostic and personal) on virtually all cases of cancer among patients genuinely resident within a defined catchment area during a prescribed period of time;

• able to supplement this with death certificate data for patients not seen in hospital

• having an adequate system for eliminating duplicate entries for the same person

• and good population data - by sex and by 5-year age groups and, if relevant, by race/language

1.1

(5/5)5.5

(11/7)80.5

(11/2)

4.0

(44/15)

83.0

(54/2)

32.5

(100/29)

11.6 total

(225/60)

Cancer Incidence in Five Continents% population covered by cancer registries in Vol. IX

(number of registries/number of countries providing data)

Geographic Distribution of Chronic HBV Infection

HBsAg Prevalence

8% - High 2-7% - Intermediate

<2% - Low

Prevalence of cervical HPV in sexually active women, 15-59 yrsIARC Multi-centre HPV Prevalence Survey, 1995-2009

Guinea*Mongolia*NigeriaChina, Shenzhen*Argentina India*China, Shenyang*Poland*ColombiaChina, Shanxi*GeorgiaChileMexicoKoreaVietnam, Ho Chi Minh Italy, Turin*Nepal*Thailand, LampangIran*Algeria*NetherlandsThailand, SongklaPakistan*Spain Vietnam, Hanoi

833999933534908

1940685834

1981671

1309971

1340870918

1013932

1024825761

3299716911908

1007

0 5 10 15 20 25 30 35 40 45 50 55

hpv 16 or 18

other high-risk type

low-risk type only

* Carried out in the last 5 years

Beral, 1974

Peto J (2001) Nature 411:290

Requirements for the Japan-Hawaii migrant studies

• Reliable recording of cancer cases in Osaka & Hawaii

• Accurate population information in both populations

• Comparable coding criteria to define cancer and to categorise cancer sites in the two populations

• Comparable recording and classification standards over time

• Reliable recording of ethnicity in Hawaii among cancer patients and within the population

Role of Population-based Cancer Registries –

Epidemiology• Studies of cause

How can this information be used?

For epidemiology:

• Provide starting points for aetiological investigations

• Source of cases for case-control studies

• Source of endpoints for cohort studies

• Intervention studies

• Data linkage studies

Gambia Hepatitis Intervention Study

• HBV vaccination trial begun in 1986 to evaluate the impact of the vaccine on chronic liver disease and liver cancer

• Total of 120,000 children (60,000 vaccinated) followed to the age of 35 years

• Collaborative study between:

• International Agency for Research on Cancer (WHO)

• The Gambia Government

• Medical Research Council (UK)

Gambian National Cancer Registry (led by Ebrima Bah, IARC)

• The only national, population-based cancer registry in Africa

• Liver cancer: most common cancer in men, second most common in women

• ASR men: 33 per 100,000

• ASR women: 15 per 100,000

• Linkage of cases of liver cancer from the National Cancer Registry to the cohort

Impact of Hepatitis B vaccination on liver cancer incidence: Taiwan

• Vaccination for infants born to HBsAg carriers during 1984-1986

• Vaccination extended for all infants aged <12 months in 1986, 1-4 year old infants in 1987

• Vaccination extended to 5-9 year old infants during 1988-1990, 10-19 years 1989-91 and to adults 20 years and above during 1990-1993

• 64 liver cancers among vaccinated subjects in 377 709 304 Pyrs Vs. 444 cancers among unvaccinated subjects in 78496 406 Pyrs during 1983-2004

• 69% reduction in liver cancer incidence among vaccinated cohort

• All liver cancer cases diagnosed between 1983-2004 were identified through linkage with Taiwan National population based cancer registry

• Clinical details (HBsAg, HCV serostatus, fetoprotein levels, HBV immunization history, treatment etc.) were obtained from the Taiwan Hepatoma Study Group Registry System

Chang et al., JNCI. 2009;101:1348-1355

Age HBsAg- HBsAg+ Percentage Total

1.0-4.9 1,920 1 0.05 1,921

5.0-9.9 1,586 5 0.31 1,591

10.0-14.9 815 10 1.21 825

15.0-18.5 273 3 1.09 276

Total 4,594 19 0.41 4,613

Impact of routine EPI on chronic HBV infection in The Gambia

Hall AJ, Peto T et al., unpublished

Supported by the Bill & Melinda Gates Foundation through the ACCP

Study group Rate/100 000 HR (95% CI)

Control 25.8 1.00

HPV 12.7 0.52 (0.33-0.83)

Cytology 21.5 0.89 (0.62-1.27)

VIA 20.9 0.86 (0.60-1.25)

CI: Confidence interval

Hazard ratios (HR) of cervical cancer deaths rates

Cluster-randomized trial of HPV screening

approaches in India

Role of Population-based Cancer Registries –

Cancer Control

How can this information be used?

For cancer control plans:

• Public health surveillance and priority planning

• Predictions of future burden

Incidence and mortality estimates 2008,

Indonesia

Monitoring screening programmes

CONCORD Study – Age-standardised five year survival for cases diagnosed 1990-94: colorectal and female breast cancer

GLOBOCAN 2008: Incidence, methods of estimation

National Incidence data (62 of 185 countries, 34%)Regional incidence (+ mortality) and national mortality (52, 29%)Regional incidence data only (23, 13%)Frequency data (13, 7%)No data (32, 18%)

National mortality data (65 of 185 countries, 36%)Sample mortality data (31, 17%)No data - incidence and survival (86, 47%)

GLOBOCAN 2008: Mortality, methods of estimation

Data availability in GLOBOCAN 2008

Incidence Mortality

Brunei National incidence National mortality

Cambodia Frequency data No data

Indonesia No data No data

Lao No data No data

Malaysia Regional CR data No data

Myanmar No data No data

Philippines Regional CR data Sample mortality data

Singapore National Incidence National mortality

Thailand Regional CR data No data

Viet Nam Regional CR data Sample mortality

South-Eastern Asia

INDONESIA

Incidence

The cancer profile in Indonesia was estimated using 5 datasets:

1.Simple mean of Singapore (Malay), Malaysia (Penang and Sarawak) “All sites but

skin’ rates (1998-2002), were partitioned using sex- site –age specific proportions

obtained from the pooling of the data from 32 Hospitals in Jakarta (2005-2007).

2.Singapore, Malay rates (1998-2002).

3.Malaysia, Penang rates (1998-2002).

4.Malaysia, Sarawak rates (1998-2002).

5.Estimated incidence rates from Papua New Guinea in 2008.

Incidence and mortality estimates 2008,

Indonesia