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Development of Cancer

Epidemiology and Cancer


Control Activities in
Indonesia

Some basic principles


Experience in Conducting
Epidemiologic Studies of Cancer
Date Topic Study Location
1978-1992 Steroid 8 Developing
Contraceptives countries
and cancer
1988-2003 Breast Self Shanghai,
Examination China
1990-1994 HPV and Cervical Bangkok,
Cancer Thailand
1991- Cohort Studies of Shanghai,
Present Multiple cancers China
Lessons Learned
 Local people know more about their country’s
health problems than outside “experts”
 Local people know what can and cannot be
done, and how to get things done
 Outside “experts” should first listen and learn
what the important problems and questions
are
 Outside “experts” can then help in the design
of rigorous programs and studies based on
sound epidemiological principles
Purposes of This Talk
 To discuss briefly the cancer problem in
Indonesia
 Consider criteria for in setting priorities for
cancer control activities
 To discuss the role of cancer epidemiology
in cancer control activities
 To provide some guide-lines for setting
priorities for cancer epidemiology activities
(including cancer registration)
Causes of Death in Indonesia
2002
Why be concerned about cancer in
Indonesia?
Transition from a Less Developed
to a More Developed Country
 Increase in disposable income
 Migration from rural to urban areas
 Changes in diet and exposures to
carcinogens
 Reduction in infectious diseases and infant
and maternal mortality
 Increase in diseases of the elderly,
including cancer
As a country transitions from a less
developed to a more developed
country cancer will become a more
important problem for 2 reasons
 Rates of most cancers increase with age,
so as more people live longer, more
people will enter the high risk age groups
 Rates of many cancers increase as a
population develops a more “western” life
style
Age Specific Mortality Rates of Colon Cancer in
Japan
As a country transitions from a less
developed to a more developed
country cancer will become a more
important problem for 2 reasons
 Rates of most cancers increase with age,
so as more people live longer, more
people will enter the high risk age groups
 Rates of many cancers increase as a
population develops a more “western” life
style
Incidence Rates of Breast and
Stomach Cancer in Japan and in
Japanese in Hawaii
Rates of Stomach Cancer in 9 Asian Populations
Over Time
Rates of Colon Cancer in 9 Asian
Populations Over Time
Incidence Rates of Breast Cancer in 9 Asian
Populations over Time
In addition to becoming a greater
problem in the future, cancer will
be come a greater problem in
relation to other health problems
as these other health problems
come under control.
Causes of Death in Thailand, China,
South Korea, and Belgium
 (WHO, 2002)
Setting Priorities for Cancer Control
Activities
 In planning for cancer control activities,
priorities must be set on the basis of:
 The magnitude of the problem (What are the
most important cancers in the population?)
 What can be done about the problem in the
areas of: Primary prevention
Secondary prevention
What are the most common
cancers in developing countries
now, and what will be the most
common cancers in the future?
The 12 Most Common Cancers in
the Developed and Developing
Regions of the World, 2002
The 12 Most Common Cancers in
the Developed and Developing
Regions of the World, 2002
Setting Priorities for Cancer Control
Activities
 In planning for cancer control activities,
priorities must be set on the basis of:
 The magnitude of the problem (What are the
most important cancer in the population?)
 What can be done about the problem in the
areas of: Primary prevention
Secondary prevention
Primary Prevention: Reduce the
occurrence of cancer by reducing
exposure to cancer causing agents
-some examples-
 Reduce smoking to prevent lung cancer
 Reduce exposure to asbestos in the work
place to prevent mesothelioma
 Vaccinate against human papilloma
viruses to prevent cervical cancer
 Vaccinate against hepatitis B virus to
prevent liver cancer
Setting Priorities for Cancer Control
Activities
 In planning for cancer control activities,
priorities must be set on the basis of:
 The magnitude of the problem (What are the
most important cancer in the population?)
 What can be done about the problem in the
areas of: Primary prevention
Secondary prevention
Secondary Prevention: Early
detection of cancer followed by
attempts 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 stage
 Examples:
 Clinical breast examination and
Mammographic screening for breast cancer
followed by effective treatment
 Pap smears for detection of cervical cancer
followed by effective treatment
An example of priority setting:

Breast Health Global Initiative


(BHGI)
Benjamin O. Anderson,
M.D.
Chair and Director
Breast Health Global Initiative
Fred Hutchinson Cancer
Research Center
Professor of Surgery
University of Washington
Seattle, Washington USA
BREAST HEALTH GLOBAL
INITIATIVE

 BHGI guideline development


BHGI GLOBAL SUMMIT 2005:
Guideline Panels

 In2002, forty (40) international


experts representing 17 countries
 In 2005, sixty-seven (67)
international experts representing:
• 33 countries
• five continents
• 13 specialty disciplines
BHGI GLOBAL SUMMIT
2005:
Guideline Panels

EARLY
DETECTION

HEALTH GLOBAL
SUMMIT DIAGNOSIS
SYSTEMS GUIDELINES

TREATMENT
BHGI GLOBAL SUMMIT 2005:
Guideline Stratification
 Basic level — Core resources or fundamental services
necessary for any breast health care system to function.
 Limited level — Second-tier resources or services that
produce major improvements in outcome such as survival.
 Enhanced level — Third-tier resources or services that
are optional but important, because they increase the
number and quality of therapeutic options and patient
choice.
 Maximal level — Highest-level resources or services
used in some high resource countries that have lower
priority on the basis of extreme cost and/or impracticality.
BHGI Global Summit 2008:
Guidelines
 EarlyDetection
 Diagnosis
 Treatment
 Health Systems (Allocation of Human
Resources)
BHGI Resources-stratified Matrix
Guidelines: Early Detection
BHGI Resources-stratified Matrix
Guidelines: Diagnosis
BHGI Resources-stratified Matrix
Guidelines: Treatment
BHGI Resources-stratified Matrix
Guidelines: Allocation of Human Resources
Breast Health Global Initiative
 Guideline Implementation
 Pilot projects
 E.g. in Ghana, Colombia, Turkey, Indonesia
The Role of Epidemiology in
Cancer Control

 Identify the magnitude of the problem and


the most important cancers
 Identify high risk groups of people
 Help plan cancer control programs
 Evaluate success of cancer control programs
How to Estimate the magnitude of
the cancer problem
 Proportional mortality ratios
 Proportional incidence ratios
 Mortality rates
 Incidence rates
Proportional Mortality ratios
 Definition:The percentage of all deaths
that are due to various cancers
 Bases on death certificates
 Give information on what the most
important causes of death are
 Can be misleading. Effected by the
frequency of other causes of death, and by
under-reporting of deaths
How to Estimate the magnitude of
the cancer problem
 Proportional mortality ratios
 Proportional incidence ratios
 Mortality rates
 Incidence rates
Proportional Incidence Ratios
 Definition: The proportion of all cancers in a
series that are of a particular type
 Based on a series of cases that are collected
from hospital records or a hospital-based cancer
registry
 Gives information on what the most important
cancers are
 Can be misleading. Effected by:
 Patterns of cancer care
 The frequency of other cancers
 The numbers of cancers that are not diagnoses and
treated
How to Estimate the magnitude of
the cancer problem
 Proportional mortality ratios
 Proportional incidence ratios
 Mortality rates
 Incidence rates
What is needed in order to obtain
accurate mortality rates?

 Accurate census of the population


 Complete ascertainment of all deaths
 Accurate information on cause of death
 A statistical unit that can analyze the data
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 estimate
the change in the population since the
census?
 What information was collected?
 How reliable is the information?
What is needed in order to obtain
accurate mortality rates?

 Accurate census of the population


 Complete ascertainment of all deaths
 Accurate information on cause of death
 A statistical unit that can analyze the data
Complete ascertainment of all
deaths
-some questions to be asked-
 How many deaths occur outside of the
medical care system and go unreported?
(70% in Indonesia?)
 Are there alternatives to death
registration? (e.g. household surveys)
What is needed in order to obtain
accurate mortality rates?

 Accurate census of the population


 Complete ascertainment of all deaths
 Accurate information on cause of death
 A statistical unit that can analyze the data
Accurate information on cause of
death
-Some questions to be asked-
 Of the deaths that are known and
reported, who is responsible for
ascertaining the cause of death?
 How accurate is the cause of death?
 How many are coded according to the
International Classification of Diseases?
(80% in Indonesia ?)
What is needed in order to obtain
accurate mortality rates?

 Accurate census of the population


 Complete ascertainment of all deaths
 Accurate information on cause of death
 A statistical unit that can analyze the data
A statistical unit that can analyze
the data
-Some questions to be asked-
 What expertise is needed? (e.g. data
management, statistician, epidemiologist)
 Where can the appropriate persons be
found?
 Are there funds available to pay these
people?
 Who will pose useful questions to be
addressed, and supervise the people in
the unit?
Conclusions regarding mortality
rates
 Like many developing countries, mortality
rated in Indonesia are probably not very
accurate
 Mortality rates of cancer are probably
underestimated
How to Estimate the magnitude of
the cancer problem
 Proportional mortality ratios
 Proportional incidence ratios
 Mortality rates
 Incidence rates
What is needed in order to obtain
accurate cancer incidence rates?

 Accurate census of the population


 Complete ascertainment of all cancer
cases by a population-based cancer
registry
 Accurate information on type of cancer
 A statistical unit that can analyze the data
Complete ascertainment of all
cancer cases
-Some questions to be asked-
 How many people with cancer do not enter
the medical care system, and are
therefore not diagnoses?
 Of the cases that do enter the medical
care system, how many are accurately
diagnoses?
 Of the cancers that are diagnosed, how
many are reported to the cancer registry?
What is needed in order to obtain
accurate cancer incidence rates?

 Accurate census of the population


 Complete ascertainment of all cancer
cases by a population-based cancer
registry
 Accurate information on type of cancer
 A statistical unit that can analyze the data
Accurate information on type of
cancer
-Some questions to be asked-

 Of those cancers that are treated, how


many are have a definitive diagnosis?
(e.g. histologically confirmed)
 Of those that are diagnosed, how many
are accurately coded according to the
international classification of diseases?
Conclusion regarding incidence
rates
 Like many developing countries, Indonesia
does not have a population based cancer
registry, and incidence rates of cancers
are not yet available.
 I will return to a discussion of cancer
registration later in this talk
The Role of Epidemiology in
Cancer Control

 Identify the magnitude of the problem and the


most important cancers
 Identify high risk groups of people
 Help plan cancer control programs
 Evaluate success of cancer control programs
Identification of High Risk Groups of people

 People at high risk of disease


 Identification of people at high risk of exposure to

known carcinogenic agents


• E.g. smokers (tobacco smoke), women with
sexually transmitted diseases (HPV), certain
industrial workers (asbestos miners, dye workers)
 Identification of groups of people with high rates of

disease (based on mortality or incidence rates)


 People at high risk of advanced disease
 Identification of people without access to screening facilities
 Identification of people who present with advanced disease
The Role of Epidemiology in
Cancer Control

 Identify the magnitude of the problem and the


most important cancers
 Identify high risk groups of people
 Help plan cancer control programs
 Evaluate success of cancer control programs
The Role of Epidemiology in
Planning Cancer control activities
 Assist in setting priorities by providing
information on which cancers are of
highest importance
 Assist in designing programs so that they
can be rigorously evaluated
The Role of Epidemiology in
Cancer Control

 Identify the magnitude of the problem and the most


important cancers
 Identify high risk groups of people
 Help plan cancer control programs
 Evaluate success of cancer control programs
 Primary prevention programs
 Secondary prevention programs
The Role of Epidemiology in Evaluating
Cancer Control Programs
 Primary prevention programs
 Determine whether there has been a reduction in
exposure to a carcinogen (an intermediate end point)
 Determine whether there has been a reduction in the
incidence of the disease (very long term, and usually
not practical for cancer)
 Secondary prevention programs
 Determine whether the cancers are being detected at
an earlier stage (essential for the reduction of
mortality)
 Determine whether survival has increased (can be
misleading)
 Determine whether mortality has been reduced
Priorities for the establishment of
cancer epidemiology activities
 First priority: Establish a cadre of well trained
epidemiologist
 Second priority: Begin collecting information on cancer
from hospital records (in the absence of a population
based cancer registry).
 Third priority: Obtain accurate information on one or
more defined populations
 Fourth priority: Analyze mortality statistics in the
defined populations
 Fifth priority: Establish a population based cancer
registry in the defined populations
 Sixth priority: Conduct epidemiological studies in the
defined populations
First Priority: Establish a Cadre of
Well Trained Epidemiologists
 Invest in training epidemiologists
 Epidemiologist are needed in order to
successfully address the remaining
priorities
Priorities for the establishment of
cancer epidemiology activities
 First priority: Establish a cadre of well trained epidemiologists
 Second priority: Begin collecting information on cancer from
hospital records This may involve establishment of a hospital-based
cancer registry.
 Case series
 Hospital-based case-control studies
 Third priority: Obtain accurate information on one or more defined
populations
 Fourth priority: Analyze mortality statistics in the defined
populations
 Fifth priority: Establish a population based cancer registry in the
defined populations
 Sixth priority: Conduct epidemiological studies in the defined
populations
An Example of a study based on
Case Series: Sarawak, Malaysia
 Purpose: To determine whether community based
breast health education program could result in
diagnosis of breast cancer at an earlier stage
(down-staging).
 Conducted in a population of about 1 million
people served by a single oncology facility
 In 1994-1999 community nurses from 154 rural
clinics and health staff from 18 district hospitals
received 2 days of training in CBE and BSE
instruction
An Example of a study based on
Case Series: Sarawak, Malaysia
 Community nurses distributed pamphlets and
posters, gave health education talks and BSE
instruction, and conducted Clinical Breast
Examinations (CBEs)
 The nurses referred women with suspicious breast
findings to a single hospital with oncology facilities
 The percentage of breast cancers that presented
at a late stage before and after the program was
determined from the records of the hospital
Percentage of patients presenting with at late stage cancers of the
nasopharynx, breast and cervix in Sarawak General Hospital
(SGH), 1991-1999 (Devi, 2007)
Priorities for the establishment of
cancer epidemiology activities
 First priority: Establish a cadre of well trained epidemiologist
 Second priority: Begin collecting information on cancer from
hospital records (in the absence of a population based cancer
registry).
 Case series
 Hospital-based case-control studies
 Third priority: Obtain accurate information on one or more defined
populations
 Fourth priority: Analyze mortality statistics in the defined
populations
 Fifth priority: Establish a population based cancer registry in the
defined populations
 Sixth priority: Conduct epidemiological studies in the defined
populations
Hospital-Based Case-Control
Studies: A fictional example
Place of Advanced % Hospital % Relative
residence Cases advanced controls Hospital Risk
Cases controls
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%

Conclusions
1. A higher percentage of women with advanced disease come from
urban areas than women who come to the hospital for other reasons
2. The chance of a woman being diagnoses with advanced breast cancer
is 60 % higher if she lives in an urban area than if she lives in a in a rural
area.
Priorities for the establishment of
cancer epidemiology activities
 First priority: Establish a cadre of well trained epidemiologist
 Second priority: Begin collecting information on cancer from
hospital records (in the absence of a population based cancer
registry).
 Case series
 Hospital-based case-control studies
 Third priority: Obtain accurate information on one or more defined
populations
 Fourth priority: Analyze mortality statistics in the defined
populations
 Fifth priority: Establish a population based cancer registry in the
defined populations
 Sixth priority: Conduct epidemiological studies in the defined
populations
Third priority: Obtain accurate information on one
or more defined populations
 Criteria for choosing a population
 An accurate census, or the facilities and resources
needed to obtain accurate census information
 Large enough population to generate enough deaths
or cancer cases to provide stable mortality or
incidence rates (1-2 million ?)
 Small enough to be able to obtain information on all of
the deaths or cancer cases with the available
resources.
 All cancers are treated in a single hospital, or just a
small 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
or more defined populations (continued)

 Other considerations in choosing a population


 Level of cooperation of local offices of vital statistics,
health departments, hospitals and pathology
laboratories in the area
 Consider 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 with
exposures to mines or petroleum refineries)
 After choosing one or more areas, obtain
information on the population (e.g. age, sex,
race, ethnic group, place of residence)
Priorities for the establishment of
cancer epidemiology activities
 First priority: Establish a cadre of well trained epidemiologist
 Second priority: Begin collecting information on cancer from
hospital records (in the absence of a population based cancer
registry).
 Case series
 Hospital-based case-control studies
 Third priority: Obtain accurate information on one or more defined
populations
 Fourth priority: Analyze mortality statistics in the defined
populations
 Fifth priority: Establish a population based cancer registry in the
defined populations
 Sixth priority: Conduct epidemiological studies in the defined
populations
Fourth priority: Analyze mortality
statistics in the defined populations
 Assess completeness of death registration in the
defined population
 Special surveys in rural areas
 Review of selected hospital records
 Other
 Assess accuracy of cause of death on death
certificates
 % recorded as ill defined or unknown
 Review of hospital records
 Other
Fourth priority: Analyze mortality
statistics in the defined populations
(continued)
 Calculate mortality rates of diseases of interest
 Describe mortality rates of cancers (or other
diseases) of interest in the population by age,
sex, race, ethnic group, place of residence.
 Report results
 Interpret results for purposes of setting priorities
for public health activities
 Participate in planning public health activities
Priorities for the establishment of
cancer epidemiology activities
 First priority: Establish a cadre of well trained epidemiologist
 Second priority: Begin collecting information on cancer from
hospital records (in the absence of a population based cancer
registry).
 Case series
 Hospital-based case-control studies
 Third priority: Obtain accurate information on one or more defined
populations
 Fourth priority: Analyze mortality statistics in the defined
populations
 Fifth priority: Establish a population based cancer registry in the
defined populations
 Sixth priority: Conduct epidemiological studies in the defined
populations
Fifth priority: Establish a
population based cancer registry in
the defined populations
 Registries should be established only in areas
that meet the criteria for choosing a population
(Third Priority)
 It is far better to establish one or more good
registries in well selected areas than to attempt to
register all cancers in a large population such as
Indonesia
 Establish a population based registry only if
 There are trained epidemiologist who will utilize the
registry to answer relevant questions
 The important questions cannot be answered by other
means (such as hospital-based series and case-
control studies and mortality statistics)
Fifth priority: Establish a
population based cancer registry in
the defined populations (continued)
 A population-based registry should only be
established if there is a stable source of funding to
ensure that the registry can be maintained over a
long period of time
 A population-based registry is best established in
association with a health department, university, or
research institution so that the data can be
appropriately used for studies of cancer etiology
and cancer care, that provide answers to questions
that need to be answered to inform decision
makers
Priorities for the establishment of
cancer epidemiology activities
 First priority: Establish a cadre of well trained epidemiologist
 Second priority: Begin collecting information on cancer from
hospital records (in the absence of a population based cancer
registry).
 Case series
 Hospital-based case-control studies
 Third priority: Obtain accurate information on one or more defined
populations
 Fourth priority: Analyze mortality statistics in the defined
populations
 Fifth priority: Establish a population based cancer registry in the
defined populations
 Sixth priority: Conduct epidemiological studies in the defined
populations
Sixth priority: Conduct
epidemiological studies in the
defined populations
 Descriptive studies
 Describe incidence rates of various cancers in
the population by age, sex, race, etc.
 Population based case-control studies
 Of cancer etiology (e.g. in relation to a
suspected environmental exposure in the
area)
 Of cancer care (example of advanced breast
cancer)
Descriptive study:
A Fictional example
Place of No. of Number of Incidence Incidence
residence Advanced women in rate per Ratio
cases Population 100,000
Women
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 breast


cancer is 50 % higher in urban than in rural areas
Population-based case-control study:
A Fictional Example
Place of Advanced % Population % Relative
residence cases advanced controls population Risk
cases controls

Urban 64 40.3% 98 30.8% 1.5


Rural 95 59.7% 220 69.2% 1.0
Total 159 100.0% 318 100.0%
Conclusions
1. A higher percentage of women with advanced
disease come from urban areas than expected from the
urban-rural distribution of the population controls
2. The chance of a woman being diagnoses with
advanced breast cancer is 50 % higher if she lives in an
urban area than if she lives in a in a rural area
Cohort Studies and Randomized
Trials
Cohort Studies
 A study group is assembled and information is
collected on all persons (e.g. use of betel nut)
 The study participants are followed over time to
determine which persons get the disease under
study (e.g. oral cancer)
 Incidence rates are compared in exposed and
unexposed persons (e.g. incidence rates in
users and non-users of betel nut)
Randomized Trials
 A group of persons is assembled and persons
are randomly assigned to 2 or more treatment
groups
 Clinical trials: diseased persons are randomly
assigned to one of 2 or more treatment groups and
survival is compared in the treatment groups
 Prevention trials: Well persons are assigned to one
of 2 or more intervention groups and reductions in
exposures, incidence rates, or mortality rates of one
or more diseases are compared in the different
groups
Examples of Randomized
Prevention Trials
 Primary prevention
 Reduction of exposure (an intermediate end point)
• Prevent children smoking by giving intensive instruction
about smoking in the schools
 Reduction of cancer incidence
• Reduce incidence of lung cancer by treating smokers with
beta-carotine supplements
 Secondary prevention
 Reduce the proportion of women with advanced
disease at diagnosis by teaching breast self
examination
 Reduce mortality from breast cancer by giving women
instruction in breast self examination
Cohort Studies and Randomized
Prevention Trials
 These types of studies of cancer are very
expensive and time consuming
 They must be very large because the occurrence of
cancer is relatively uncommon
 They must be long term because the end points
(cancer or deaths from cancer) usually occur only
after several years
 They are therefore not usually conducted in
developing countries with limited resources
unless there are unusual circumstances
(opportunities or exposures) and an outside
source of funding
Cohort studies and Randomized
Prevention Trials
 If there is a means of actively following up the study
participants, you do not need a population based cancer
registry
 However, if all persons in the study are residents of a
defined population with good mortality statistics or a
population based cancer registry, then the mortality
statistics and the cancer registry can facilitate follow-up
of the study participants
 The presence of a good population based registry could
therefore attract outside collaborators and sources of
funding
Development of Cancer Epidemiology
and Cancer Control Activities in
Indonesia
Summary
 We should be concerned about cancer in Indonesia
 Priorities for cancer control activities should be based on the
magnitude of the problem and the availability of resources
 Well trained epidemiologists should be involved in the planning
and evaluation of any cancer control program
 Priorities for the establishment of cancer epidemiology activities
should be based on available resources and proceed in a
rational manner from the easiest and least expensive based on
existing resources, to the more complex and more expensive
requiring the development of additional resources (including a
cancer registry).