Development of Cancer Epidemiology and Cancer Control Activities in Indonesia

8/8/2019 Development of Cancer Epidemiology and Cancer Control Activities in Indonesia

1/90

Development of Cancer

Epidemiology and CancerControl Activities in

Indonesia

Some basic principles


2/90

Experience in ConductingEpidemiologic Studies of Cancer

Date Topic Study Location

1978-1992 SteroidContraceptivesand cancer

8 Developingcountries

1988-2003 Breast SelfExamination

Shanghai,China

1990-1994 HPV and CervicalCancer

Bangkok,Thailand

1991-Present

Cohort Studies ofMultiple cancers

Shanghai,China


3/90

Lessons Learned

Local people know more about their countryshealth problems than outside expertsLocal people know what can and cannot be

done, and how to get things doneOutside experts should first listen and learnwhat the important problems and questionsare

Outside experts can then help in the designof rigorous programs and studies based onsound epidemiological principles


4/90

Purposes of This Talk

To discuss briefly the cancer problem inIndonesiaConsider criteria for in setting priorities forcancer control activitiesTo discuss the role of cancer epidemiologyin cancer control activities

To provide some guide-lines for settingpriorities for cancer epidemiology activities(including cancer registration)


5/90

Causes of Death in Indonesia2002


6/90

Why be concerned about cancer in

Indonesia?


7/90

Transition from a Less Developedto a More Developed Country

Increase in disposable incomeMigration from rural to urban areas

Changes in diet and exposures tocarcinogensReduction in infectious diseases and infant

and maternal mortalityIncrease in diseases of the elderly,including cancer


8/90

As a country transitions from a lessdeveloped to a more developed

country cancer will become a moreimportant problem for 2 reasonsRates of most cancers increase with age,so as more people live longer, morepeople will enter the high risk age groupsRates of many cancers increase as apopulation develops a more western lifestyle


9/90

Age Specific Mortality Rates of Colon Cancer inJapan


10/90

As a country transitions from a lessdeveloped to a more developed

country cancer will become a moreimportant problem for 2 reasonsRates of most cancers increase with age,so as more people live longer, morepeople will enter the high risk age groupsRates of many cancers increase as apopulation develops a more western lifestyle


11/90

Incidence Rates of Breast andStomach Cancer in Japan and in

Japanese in Hawaii


12/90

Rates of Stomach Cancer in 9 Asian PopulationsOver Time


13/90

Rates of Colon Cancer in 9 AsianPopulations Over Time


14/90

Incidence Rates of Breast Cancer in 9 AsianPopulations over Time


15/90

In addition to becoming a greaterproblem in the future, cancer will

be come a greater problem in

relation to other health problemsas these other health problemscome under control.


16/90

Causes of Death in Thailand, China,South Korea, and Belgium

(WHO, 2002)


17/90

Setting Priorities for Cancer ControlActivities

In planning for cancer control activities,priorities must be set on the basis of:

The magnitude of the problem (What are themost important cancers in the population?)What can be done about the problem in theareas of: Primary prevention

Secondary prevention


18/90

What are the most commoncancers in developing countriesnow, and what will be the most

common cancers in the future?

Th 12 M C C i


19/90

The 12 Most Common Cancers inthe Developed and Developing

Regions of the World, 2002

Th 12 M C C i


20/90

The 12 Most Common Cancers inthe Developed and Developing

Regions of the World, 2002


21/90



The magnitude of the problem (What are themost important cancer in the population?)What can be done about the problem in theareas of: Primary prevention


P i P i R d h


22/90

Primary Prevention : Reduce theoccurrence of cancer by reducing

exposure to cancer causing agents-some examples-Reduce smoking to prevent lung cancer

Reduce exposure to asbestos in the workplace to prevent mesotheliomaVaccinate against human papilloma

viruses to prevent cervical cancerVaccinate against hepatitis B virus toprevent liver cancer


23/90



The magnitude of the problem (What are themost important cancer in the population?)What can be done about the problem in theareas of: Primary prevention



24/90

Secondary Prevention : Earlydetection of cancer followed byattempts at curative treatment

Necessary elements:A means to detect the cancer early at a stage

at which it can be treated (e.g. screening)A means to treat the cancer at that stageExamples:

Clinical breast examination andMammographic screening for breast cancerfollowed by effective treatmentPap smears for detection of cervical cancerfollowed by effective treatment


25/90

An example of priority setting :

Breast Health G lobal Initiative

(BHGI)Benjamin O. Anderson,

M.D.Chair and DirectorBreast Health Global Initiative

Fred Hutchinson CancerResearch CenterProfessor of SurgeryUniversity of Washington

Seattle, Washington USA
http://www.komen.org/


26/90

BREAST HEALTH GLOBALINITIATIVE

BHGI guideline development


27/90

BHGI GLOBAL SUMMIT 2005:Guideline Panels

In 2002, forty (40) internationalexperts representing 17 countries

In 2005, sixty-seven (67)international experts representing:

33 countries

five continents

13 specialty disciplines


28/90

BHGI GLOBAL SUMMIT2005:

Guideline Panels

GLOBAL

SUMMIT

GUIDELINES

EARLYDETECTION

DIAGNOSIS

TREATMENT

HEALTHSYSTEMS


29/90

Basic level Core resources or fundamental servicesnecessary for any breast health care system to function.

Limited level Second-tier resources or services thatproduce major improvements in outcome such as survival.

Enhanced level Third-tier resources or services thatare optional but important, because they increase thenumber and quality of therapeutic options and patientchoice.

Maximal level Highest-level resources or servicesused in some high resource countries that have lowerpriority on the basis of extreme cost and/or impracticality.

BHGI GLOBAL SUMMIT 2005:Guideline Stratification


30/90

BHGI Global Summit 2008:Guidelines

Early DetectionDiagnosis

TreatmentHealth Systems (Allocation of HumanResources)


31/90

BHGI Resources-stratified MatrixGuidelines: Early Detection


32/90

BHGI Resources-stratified MatrixGuidelines: Diagnosis

BHGI R ifi d M i


33/90

BHGI Resources-stratified MatrixGuidelines: Treatment


34/90

BHGI Resources-stratified MatrixGuidelines: Allocation of Human Resources


35/90

Breast Health Global Initiative

Guideline ImplementationPilot projectsE.g. in Ghana, Colombia, Turkey, Indonesia


36/90

The Role of Epidemiology inCancer Control

Identify the magnitude of the problem andthe most important cancersIdentify high risk groups of peopleHelp plan cancer control programsEvaluate success of cancer control programs


37/90

How to Estimate the magnitude ofthe cancer problem

Proportional mortality ratiosProportional incidence ratios

Mortality ratesIncidence rates


38/90

Proportional Mortality ratios

Definition: The percentage of all deathsthat are due to various cancersBases on death certificatesGive information on what the mostimportant causes of death areCan be misleading. Effected by thefrequency of other causes of death, and byunder-reporting of deaths


39/90





40/90

Proportional Incidence Ratios

Definition: The proportion of all cancers in aseries that are of a particular typeBased on a series of cases that are collectedfrom hospital records or a hospital-based cancerregistryGives information on what the most importantcancers areCan be misleading. Effected by:

Patterns of cancer careThe frequency of other cancersThe numbers of cancers that are not diagnoses andtreated


41/90





42/90

What is needed in order to obtainaccurate mortality rates ?

Accurate census of the population

Complete ascertainment of all deathsAccurate information on cause of deathA statistical unit that can analyze the data


43/90

Accurate Census of the Population

-Some questions to be asked-How long ago was the last census?

How complete was the coverage?What efforts have been made to estimatethe change in the population since the

census?What information was collected?How reliable is the information?


44/90

What is needed in order to obtainaccurate mortality rates?



Complete ascertainment of all


45/90

Complete ascertainment of alldeaths

-some questions to be asked-How many deaths occur outside of themedical care system and go unreported?

(70% in Indonesia?)Are there alternatives to deathregistration? (e.g. household surveys)


46/90

f f


47/90

Accurate information on cause ofdeath

-Some questions to be asked-Of the deaths that are known andreported, who is responsible forascertaining the cause of death?How accurate is the cause of death?How many are coded according to theInternational Classification of Diseases?(80% in Indonesia ?)


48/90

What is needed in order to obtainaccurate mortality rates?



A i i l i h l


49/90

A statistical unit that can analyzethe data

-Some questions to be asked-What expertise is needed? (e.g. datamanagement, statistician, epidemiologist)

Where can the appropriate persons befound?Are there funds available to pay these

people?Who will pose useful questions to beaddressed, and supervise the people inthe unit?


50/90

Conclusions regarding mortalityrates

Like many developing countries, mortalityrated in Indonesia are probably not veryaccurateMortality rates of cancer are probablyunderestimated


51/90


Proportional mortality ratiosProportional incidence ratiosMortality ratesIncidence rates

h d d d b


52/90

What is needed in order to obtainaccurate cancer incidence rates?


Complete ascertainment of all cancercases by a population-based cancerregistry

Accurate information on type of cancerA statistical unit that can analyze the data

Complete ascertainment of all


53/90

Complete ascertainment of allcancer cases

-Some questions to be asked-How many people with cancer do not enterthe medical care system, and aretherefore not diagnoses?Of the cases that do enter the medicalcare system, how many are accuratelydiagnoses?Of the cancers that are diagnosed, howmany are reported to the cancer registry?

h i d d i d b i


54/90

What is needed in order to obtainaccurate cancer incidence rates?


Complete ascertainment of all cancercases by a population-based cancerregistry

Accurate information on type of cancerA statistical unit that can analyze the data

f f


55/90

Accurate information on type ofcancer

-Some questions to be asked-

Of those cancers that are treated, howmany are have a definitive diagnosis?(e.g. histologically confirmed)

Of those that are diagnosed, how manyare accurately coded according to theinternational classification of diseases?

C l i di i id


56/90

Conclusion regarding incidencerates

Like many developing countries, Indonesiadoes not have a population based cancerregistry, and incidence rates of cancersare not yet available.I will return to a discussion of cancerregistration later in this talk

Th R l f E id i l i


57/90


Identify the magnitude of the problem and themost important cancersIdentify high risk groups of peopleHelp plan cancer control programsEvaluate success of cancer control programs


58/90

Identification of High Risk Groups of people

People at high risk of diseaseIdentification of people at high risk of exposure toknown carcinogenic agents

E.g. smokers (tobacco smoke), women withsexually transmitted diseases (HPV), certainindustrial workers (asbestos miners, dye workers)

Identification of groups of people with high rates ofdisease (based on mortality or incidence rates)

People at high risk of advanced diseaseIdentification of people without access to screening facilitiesIdentification of people who present with advanced disease

Th R l f E id i l i


59/90


Identify the magnitude of the problem and themost important cancersIdentify high risk groups of peopleHelp plan cancer control programsEvaluate success of cancer control programs

Th R l f E id i l i


60/90

The Role of Epidemiology inPlanning Cancer control activitiesAssist in setting priorities by providinginformation on which cancers are ofhighest importanceAssist in designing programs so that theycan be rigorously evaluated

Th R l f E id i l i


61/90


Identify the magnitude of the problem and the mostimportant cancers

Identify high risk groups of peopleHelp plan cancer control programsEvaluate success of cancer control programs

Primary prevention programsSecondary prevention programs

h l f d l l


62/90

The Role of Epidemiology in EvaluatingCancer Control Programs

Primary prevention programsDetermine whether there has been a reduction inexposure to a carcinogen (an intermediate end point)Determine whether there has been a reduction in theincidence of the disease (very long term, and usuallynot practical for cancer)

Secondary prevention programsDetermine whether the cancers are being detected atan earlier stage (essential for the reduction of

mortality)Determine whether survival has increased (can bemisleading)Determine whether mortality has been reduced

P i iti f th t bli h t f


63/90

Priorities for the establishment ofcancer epidemiology activities

First priority : Establish a cadre of well trainedepidemiologistSecond priority : Begin collecting information on cancerfrom hospital records (in the absence of a populationbased cancer registry).Third priority : Obtain accurate information on one ormore defined populationsFourth priority : Analyze mortality statistics in thedefined populationsFifth priority : Establish a population based cancerregistry in the defined populationsSixth priority : Conduct epidemiological studies in thedefined populations

Fi t P i it E t bli h C d f


64/90

First Priority : Establish a Cadre ofWell Trained Epidemiologists

Invest in training epidemiologistsEpidemiologist are needed in order tosuccessfully address the remainingpriorities

Priorities for the establishment of


65/90


First priority : Establish a cadre of well trained epidemiologistsSecond priority : Begin collecting information on cancer fromhospital records This may involve establishment of a hospital-basedcancer registry.

Case seriesHospital-based case-control studies

Third priority : Obtain accurate information on one or more definedpopulationsFourth priority : Analyze mortality statistics in the definedpopulationsFifth priority : Establish a population based cancer registry in thedefined populationsSixth priority : Conduct epidemiological studies in the definedpopulations

An Example of a study based on


66/90

An Example of a study based onCase Series: Sarawak, MalaysiaPurpose: To determine whether community basedbreast health education program could result indiagnosis of breast cancer at an earlier stage(down-staging).

Conducted in a population of about 1 millionpeople served by a single oncology facilityIn 1994-1999 community nurses from 154 ruralclinics and health staff from 18 district hospitalsreceived 2 days of training in CBE and BSEinstruction

An Example of a study based on


67/90

An Example of a study based onCase Series: Sarawak, MalaysiaCommunity nurses distributed pamphlets andposters, gave health education talks and BSEinstruction, and conducted Clinical BreastExaminations (CBEs)

The nurses referred women with suspicious breastfindings to a single hospital with oncology facilitiesThe percentage of breast cancers that presentedat a late stage before and after the program wasdetermined from the records of the hospital


68/90



69/90


First priority : Establish a cadre of well trained epidemiologistSecond priority : Begin collecting information on cancer fromhospital records (in the absence of a population based cancerregistry).



Hospital Based Case Control


70/90

Hospital-Based Case-ControlStudies : A fictional example

Place ofresidence

AdvancedCases

%advancedCases

Hospitalcontrols

%Hospitalcontrols

RelativeRisk

Urban 22 26.2% 30 17.9% 1.6

Rural 62 73.8% 138 82.1% 1.0

Total 84 100.0% 168 100.0%

Conclusions1. A higher percentage of women with advanced disease come fromurban areas than women who come to the hospital for other reasons2. The chance of a woman being diagnoses with advanced breast canceris 60 % higher if she lives in an urban area than if she lives in a in a ruralarea.



71/90





Third priority : Obtain accurate information on oned fi d l i


72/90

or more defined populationsCriteria for choosing a population

An accurate census, or the facilities and resourcesneeded to obtain accurate census informationLarge enough population to generate enough deathsor cancer cases to provide stable mortality orincidence rates (1-2 million ?)Small enough to be able to obtain information on all ofthe deaths or cancer cases with the availableresources.All cancers are treated in a single hospital, or just asmall number of hospitals

People should not go out of the area for care(although people may come into the area for care )

Third priority : Obtain accurate information on one


73/90

p yor more defined populations (continued)

Other considerations in choosing a populationLevel of cooperation of local offices of vital statistics,health departments, hospitals and pathologylaboratories in the areaConsider populations of special interest

E.g. with different ethnic groups of interest (e.g. in Indonesia,Javanese, Sundanese, Malays, Madurese, Chinese)

E.g. with unusual exposures of interest (e.g. in areas withexposures to mines or petroleum refineries)

After choosing one or more areas, obtaininformation on the population (e.g. age, sex,race, ethnic group, place of residence)



74/90





Fourth priority : Analyze mortality


75/90

Fourth priority : Analyze mortalitystatistics in the defined populations

Assess completeness of death registration in thedefined population

Special surveys in rural areas

Review of selected hospital recordsOther

Assess accuracy of cause of death on deathcertificates

% recorded as ill defined or unknownReview of hospital recordsOther

Fourth priority : Analyze mortality


76/90

p y y ystatistics in the defined populations

(continued)Calculate mortality rates of diseases of interestDescribe mortality rates of cancers (or otherdiseases) of interest in the population by age,sex, race, ethnic group, place of residence.Report resultsInterpret results for purposes of setting prioritiesfor public health activitiesParticipate in planning public health activities



77/90





Fifth priority : Establish a


78/90

Fifth priority : Establish apopulation based cancer registry in

the defined populationsRegistries should be established only in areasthat meet the criteria for choosing a population(Third Priority)

It is far better to establish one or more goodregistries in well selected areas than to attempt toregister all cancers in a large population such asIndonesia

Establish a population based registry only ifThere are trained epidemiologist who will utilize theregistry to answer relevant questionsThe important questions cannot be answered by othermeans (such as hospital-based series and case-control studies and mortality statistics)

Fifth priority : Establish a


79/90

p ypopulation based cancer registry in

the defined populations (continued)A population-based registry should only beestablished if there is a stable source of funding toensure that the registry can be maintained over along period of timeA population-based registry is best established inassociation with a health department, university, or

research institution so that the data can beappropriately used for studies of cancer etiologyand cancer care, that provide answers to questionsthat need to be answered to inform decisionmakers



80/90





Sixth priority : Conduct


81/90

Sixth priority : Co ductepidemiological studies in the

defined populationsDescriptive studies

Describe incidence rates of various cancers inthe population by age, sex, race, etc.

Population based case-control studiesOf cancer etiology (e.g. in relation to a

suspected environmental exposure in thearea)Of cancer care (example of advanced breastcancer)

Descriptive study:


82/90

Descriptive study:A Fictional example

Place ofresidence

No. ofAdvancedcases

Number ofwomen inPopulation

Incidencerate per100,000Women

IncidenceRatio

Urban 64 90,000 71.1 1.5

Rural 95 200,000 47.5 1.0

Total 159 290,000 54.8 -----

Conclusion: The incidence of advanced breastcancer is 50 % higher in urban than in rural areas

Population-based case-control study:


83/90

A Fictional ExamplePlace of

residence

Advanced

cases

%

advancedcases

Population

controls

%

populationcontrols

Relative

Risk

Urban 64 40.3% 98 30.8% 1.5Rural 95 59.7% 220 69.2% 1.0Total 159 100.0% 318 100.0%

Conclusions1. A higher percentage of women with advanced

disease come from urban areas than expected from theurban-rural distribution of the population controls2. The chance of a woman being diagnoses withadvanced breast cancer is 50 % higher if she lives in anurban area than if she lives in a in a rural area


84/90

Cohort Studies and RandomizedTrials


85/90

Cohort Studies

A study group is assembled and information iscollected on all persons (e.g. use of betel nut)The study participants are followed over time to

determine which persons get the disease understudy (e.g. oral cancer)Incidence rates are compared in exposed andunexposed persons (e.g. incidence rates inusers and non-users of betel nut)

d d l


86/90

Randomized Trials

A group of persons is assembled and personsare randomly assigned to 2 or more treatmentgroups

Clinical trials: diseased persons are randomlyassigned to one of 2 or more treatment groups andsurvival is compared in the treatment groupsPrevention trials : Well persons are assigned to oneof 2 or more intervention groups and reductions inexposures, incidence rates, or mortality rates of oneor more diseases are compared in the differentgroups

Examples of Randomized


87/90

Examples of RandomizedPrevention Trials

Primary preventionReduction of exposure (an intermediate end point)

Prevent children smoking by giving intensive instructionabout smoking in the schools

Reduction of cancer incidence Reduce incidence of lung cancer by treating smokers with

beta-carotine supplements

Secondary preventionReduce the proportion of women with advanceddisease at diagnosis by teaching breast selfexaminationReduce mortality from breast cancer by giving womeninstruction in breast self examination

Cohort Studies and Randomized


88/90

Cohort Studies and RandomizedPrevention Trials

These types of studies of cancer are veryexpensive and time consumingThey must be very large because the occurrence ofcancer is relatively uncommonThey must be long term because the end points(cancer or deaths from cancer) usually occur onlyafter several years

They are therefore not usually conducted indeveloping countries with limited resources

unless there are unusual circumstances(opportunities or exposures) and an outsidesource of funding

Cohort studies and Randomized


89/90

Cohort studies and RandomizedPrevention Trials

If there is a means of actively following up the studyparticipants, you do not need a population based cancerregistry

However, if all persons in the study are residents of adefined population with good mortality statistics or apopulation based cancer registry, then the mortalitystatistics and the cancer registry can facilitate follow-upof the study participants

The presence of a good population based registry couldtherefore attract outside collaborators and sources offunding

Development of Cancer Epidemiology


90/90

p p gyand Cancer Control Activities in

IndonesiaSummary

We should be concerned about cancer in IndonesiaPriorities for cancer control activities should be based on themagnitude of the problem and the availability of resourcesWell trained epidemiologists should be involved in the planningand evaluation of any cancer control programPriorities for the establishment of cancer epidemiology activities

should be based on available resources and proceed in arational manner from the easiest and least expensive based onexisting resources, to the more complex and more expensiverequiring the development of additional resources (including a

Development of Cancer Epidemiology and Cancer Control Activities in Indonesia

Documents

Transcript of Development of Cancer Epidemiology and Cancer Control Activities in Indonesia