Cancer Registry Data

Quality and Analysis

Hai-Rim Shin
Data Analysis and Interpretation Group
International Agency for Research on Cancer
Lyon, France

9 November 2009
Indonesia
http://www-dep.iarc.fr/
 Coding and
Classification
system: ICD-O3
DEP Edits
Crg tools:
Multiple Primary CHECK
Rules Program
 Cancer registry IARC (DEP)
Yes
ICD-O-3
data
No
Data cleaning team
1. Preliminary conversion into ICD-O-3
Mathieu Mazuir
Eric Masuyer
Error Mohssen Issa
(1)

Yes/No
2. Edit checks (DEPedits) Data processing team
Morten Ervik
Jacques Ferlay
Yes Error Mary Heanue
(1+2)
Yes/No
3. Multiple primary check 4. Conversion from ICD-O-3 to ICD-10

5. Check mortality and population files

6. Update process form, MS access and Excel sheet

7. Convert the incidence, mortality 8. Produce editorial

and population raw data files into a tables/Update Excel sheet
common file format

Tables
No (missing information) OK Yes

editors (FTP site)

 Quality : Quality Control
Quality of Data
The registry data – reliable and of good quality
Should be complete, consistent and accurate

Quality Control
The mechanism by which the quality of data
can be assessed
* a formal ongoing programme
* ad hoc survey to assess completeness and
consistency of case finding, abstracting, and coding
as well as the accuracy of reporting
 References

• Skeet RG. Quality and quality control. In: Jensen OM,

Parkin DM, Malclennan R, Muir CS, Skeet RG, editors.
Cancer registration . Principals and methods (IARC
Scientific publications no. 95). Lyon: IARC Scientific
Publications;1991:p 101-7
• Parkin DM, Chen VW, Ferlay J, Galceran J, Storm HH,
Whelan SL, editors. Comparability and quality control in
cancer registration (IARC technical report no. 19). Lyon:
IARC (WHO) and IACR; 1994
 Quality of information

1. Completeness of cover
2. Completeness of detail
3. Accuracy of detail
4. Accuracy of reporting
5. Accuracy of interpretation
 Quality of information
1. Completeness of cover
every cancer cases, no duplicates
2. Completeness of detail
essential items: diagnosis, sex,
non-essential items: “not recoded” “not applicable”,
and “ not known”
3. Accuracy of detail
errors of detail: abstraction, transcription, coding…
4. Accuracy of reporting
5. Accuracy of interpretation
to properly interpret the information, it is essential to
have an understanding of the data sources and how the
data are collected and processed
 Quality Control

1. Assessment of completeness
Objective measures of completeness
Completeness and accuracy of detail
2. Continuous or ad hoc Quality
Control
3. Computer checks for data quality
 Assessment of Completeness

• The population-based registry aims to record all

cancer cases occurring within its defined
geographical area
• Constantly monitored, rather than occasionally
measured
(a) by monitoring the proportions of death certificates (DCN
versus DCO)
(b) Monitor incidence of each site annually
(c) Monitor the difference in incidence rats for the
subdivision in incidence rates
(d) Sample patient attendance at a specialized clinic
Completeness and accuracy of details

• All incoming reports or registry abstracts

should be checked rapidly upon arrival to
ensure that at least all the essential items of
information are complete
(a) by “blind” re-abstraction and recoding without refernce
to the original registration
(b) In computerized registries data-quality can be checked
using automated routines
- validation checks: coding control files
- consistency checks:
cervix uteri in males or prostate in females
subsequence date of birth
site-specific morphology terms
Pre-requisites for quality control

• Rules and documentation

the form of a procedural manual

• Good coding systems

only one code is allocated for each appropriate term

• Standards
maximum tolerable error rate
5% for the three-digit level of ICD-O
0.5% for sex
Evaluation of data quality in the
cancer registry
v Completeness
v Comparability
v Validity or accuracy
v Timeliness
Review papers
Bray F, Parkin DM. Evaluation of data quality in the cancer
registry: Principles and methods. Part I: Comparability, validity
and timeliness. European J of Cancer 2008
Parkin DM, Bray F. Evaluation of data quality in the cancer
registry: Principles and methods. Part II: Completenss.
European J of Cancer 2008
 Comparability

• The system used for classification and coding of

neoplasms;
• The definition of incidence, i.e. what is defined
as a case, and what is the definition of the
incidence date;
• The distinction between a primary cancer (new
case) and an extension, recurrence or
metastasis of an existing one;
• The recoding of cancers detected in
asymptomatic individuals
 Comparability

1. International standards for

classification and coding of
neoplasms
(International Classification of
Diseases for Oncology ICD-O)
2. Incidence date
3. Multiple primaries
4. Incidental diagnosis

Comparability
 International standards for classification
and coding of neoplasm

1. ICD-O-3 (2000, WHO)

Topography: location of the tumour in the body
(T code: C16)
Morphology: microscopic appearance and
cellular origin of the tumor
(M code: 8000)
Behavior: whether the tumour is malignant,
benign, in situ or uncertain (/3)
Grade: the extent of defferentiation of tumour

A standard coding scheme is also provided for

recording the basis of diagnosis of cancers

Comparability
 Date of diagnosis: Incidence date
SEER Program Coding and Staging Manual 2007
(pp 61-64)
ENCR, 1999
-Standards recommended for the definitions of
incidence
-1. Date of first histological or cytological
confirmation
-2. Date of admission to the hospital
-3. date of first evaluation (outpatient clinic)
-4. Date of diagnosis other than 1,2,3
-5. Date of death, if no information is available
-6. Date of death – at autopsy

Comparability
 Multiple primaries

IARC Multiple Primary Rule

(2000 and 2004)

International rules for multiple primary cancers ICD-O-3rd

ed 2004. IARC Internal Report No. 2004 /02
 IARC/IACR Multiple Primary Rules
(2000) (2004)
Groups of topography for a single site Groups of topography for a single site
Tcode Description
Tcode Description *
C01 Base of tongue
C02 Other and unspecified parts of tongue C01 Base of tongue
C05 Palate C02 Other and unspecified parts of tongue C02.9
C06 Other and unspecified parts of mouth
C00 Lip
C07 Parotid gland
C03 Gum
C08 Other and unspecified major salivary glands
C04 Floor of mouth
C09 Tonsil
C10 Oropharynx C05 Palate
C12 Hypopharynx C06 Other and unspecified parts of mouth C06.9
C13 Hypopharynx C09 Tonsil
C19 Rectosigmoid junction C10 Oropharynx
C20 Rectum
C12 Pyriform sinus
C23 Gallbladder
C13 Hypopharynx
C24 Other & unspecified parts of biliary tract
C14 Other and ill-defined sites in lip, oral C14.0
C30 Nasal cavity & middle ear
cavity and pharynx
C31 Accessory sinus
C33 Trachea C19 Rectosigmoid junction
C34 Bronchus & lung C20 Rectum C20.9
C37 Thymus
C38.0-3 Heart and mediastinum C23 Gallbladder
C38.8 Overlapping lesion of heart, mediastinum and pleura Other & unspecified parts of biliary tract
C24 C24.9
C40 Bones, joints & articular cartilage of limbs
C41 Bones, joints & articular cartilage of other sites C33 Trachea
C51 Vulva C34 Bronchus & lung C34.9
C52 Vagina
C57.7 Other specified female genital C40 Bones, joints&articular cartilage of imbs
C57.8-9 Overlapping lesion and female genital tract, NOS
C60 Penis C41 Bones, joints & articular cartilage of other C41.9
C63 Other & unspecified male genital organs sites
C64 Kidney C65 Renal pelvis
C65 Renal pelvis
C66 Ureter C66 Ureter
C68 Other & unspecified urinary organs
C67 Bladder
C74 Adrenal gland
C75 Other endocrine glands & related structures C68 Other & unspecified urinary organs C68.9

* If diagnosed at different times, code first diagnosis. If diagnosed at the same time use codes given below.
 Incidental diagnosis

Incidental diagnosis refers to the detection

of cancer incidentally
1. Screen detected cancers
Aim of screening : to detect cancers that are
asymptomatic at an earlier stage
- increasing with prevalent cancers
- tend reduce incidence rates of colon and cervix
cancer via the removal of premalignant lesions
2. Autopsy diagnosis ? In Asia

Comparability
 Validity (accuracy)
1. Reabstracting and recoding
2. Histological verification
the index of validity: the percentage of cases
morphologically verified
3. Death Certificate Only (DCO)
4. Missing information
5. Internal consistency:
IARC, IACR CHECK program
 Timeliness

• Rapid reporting of information on

cancer cases is another priority
• There are no international guidelines
for timeliness at present, but
-North American agencies have set
out specific standards for the relevant
registries
- SEER: with 22 month of the end of
the diagnosis year
 Completeness

1. Semi-quantitative methods

2. Quantitative methods
 Semi-quantitative methods

• Historic data methods

Stability of incidence rates over time
Comparison of incidence rates in different populations
Shape of age-specific curves
Incidence rates of childhood cancers
• Mortality:Incidence ratios
• Number of sources/notification per case
Average number of sources per case
Average number of notifications per case
• Histological verification of diagnosis
 Quantitative methods

• Independent case ascertainment

• Capture-recapture method
• Death certificate methods
DCN/M:I method
The flow method
Cases recruited into an international clinical
follow-up study
Patients enrolled into a multi-centre clinical
trial
Others from various studies
Example: Incidence rates by year
Example: Incidence rates by year
 CI5 volume 9 (Editorial sheet 4)
Quality indicators
Male
 CI5 volume 9 (Editorial sheet 4)
Quality indicators
Female
 Example

* Average percentage annual change since volume

8 (1995-1997)
Significant changes (95% confidence level,
Miettinen method, page 869 of volume 6) are
marked in bold
Rate 0- is significantly different. (24.3 vs 16.0)
Rate 5- is significantly different. (12.1 vs 6.5)
Rate 10- is significantly different. (13.4 vs 6.0)
Quality Indices:MV%, DCO%, UNK%, M/I ,
MV% but C22, MV% but C91-95

B
 Data quality and Comparability
Criteria CI5 vol IX
A B C Excluded
Complete coverage No access to death No Death DCO, Unk, ill-defined
certificates Clearance as site > 20%
Death reporting source of case
meet WHO Official mortality finding MV% too high (99-
recommendations data not available v 100%) or low for
by cause or poor No official selected sites
%Unk, DCO, Ill- quality by cause mortality data (overall MV% < 75%)
defined site <10% v
10% < %Unk, No ad hoc study of M/I threshold by site
No abrupt trends, DCO, ill-defined completeness
cases site <20% Implausible incidence
denominators OK rates
75% < MV% < v
MV% > 80% 80% Specialized registries
(99-100% e.g. childhood,
excluded) MV% but C22 mesothelioma
DCO 0.0 % MV% but C91-95
(DCO:none ) Data with <2 years
The ten countries represent 60% of the
total world population in 2005 (6500 m)
Cancer Registry
Country No of Pop
Population in CI5 IX /
name (m)
submitted
1 China 1,310 15,119,393 / 72,068,328
2 India 1,135 35,794,438 / 38,292,525
3 USA 300 235,085,829
4 Indonesia 225 No
5 Brazil 185 14,228,192/ 24,721,437
6 Pakistan 160 1,723,615
7 Bangladesh 155 No
8 Russia 145 7,309,224
9 Nigeria 140 No
10 Japan 130 16,922,733 / more
Estimates in Indonesia
GLOBOCAN2002

Incidence (3A)
Simple mean of;
Semarang (1998-1992), unpublished data
Singapore Malay (1993-1997)?
Cancer Incidence in Five Continents Vol VIII?

Mortality (5)
Incidence and survival (DEV)
Estimates of New Cases in Indonesia
GLOBOCAN2002

Males Females
 Information about Cancer
Epidemiology in Indonesia
• Cervical cancer is the most common cancer
among women in the Indonesian population.
HPV prevalence: 11.4% (Vet JN et al, 2008)
• Stomach cancer: exceedingly low incidences in
ethnic Malays, whether in Malaysia or
Indonesia (Tokudome S, 2007)
• Breast Cancer; a relatively high percentage of
early onset Indonesian breast cancer patients
carry a germline mutation in either BRCA1 or
BRCA2 (Purnomosari D, 2007)
• NPC: EBV antigen (Paramita D, 2007)
 Indonesia Population in 2008
80+

70-74

60-64
Males Females
50-54

40-44

30-34

20-24

10-14

0-4

-15,000 -10,000 -5,000 0 5,000 10,000 15,000

 Indonesia Population in 2020
80+

70-74

60-64
Males Females
50-54

40-44

30-34

20-24

10-14

0-4

-15,000 -10,000 -5,000 0 5,000 10,000 15,000

 GLOBOCAN update
Cancer Incidence in Five Continents Volume IX
(CI5 IX) has been published in the website in
November 2007.

The objective of GLOBOCAN is providing

estimates of cancer incidence, mortality, and
prevalence for 28 major cancers.

Data Analysis and Interpretation (DEA) Group

and DEP at IARC in collaboration with GBD group
of WHO started to update the GLOBOCAN
estimates.
 Burden of cancer
• Incidence, Mortality, Prevalence, Survival
• Causes of cancer
• Tobacco Smoking • Alcohol Drinking
• Infectious Agents • Occupation
• Environment • Radiation
• Diet • Reproductive factors
• Obesity • Physical inactivity
• Genetic • HRT/Oral Contraceptive

• Population attributable fraction

• Cancer control (planning/monitoring)
Thank you very much for your attention.