3_data collection and coverage_lutz.pdf

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Monotoraggio e valutazione del rischio ambientale mutageno, teratogeno Catania, 18-20 September 2013Jean-Michel Lutz

Data collection in cancer registration :Basic information, variables definition

Jean-Michel Lutz

National Institute for Cancer Epidemiology and Registration

(NICER) Zurich, Switzerland


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Why do we need cancer registries ?

Items usually collected

Data collection processes


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MALES Mortality

N Tx*

Stomach 338 7.9

Colon rectum 836 19.5

Lung & Br. 1977 47.7

Skin melan. 138 3.3

Prostate 1302 28.6

Testis 15 0.4

Bladder 304 6.9

Brain CNS 239 6.1

NHLymphomas 295 7.0

Leukemias 275 6.5

All cancers 8508 200.7


TX : Standardized Incidence rates (European population), for 100'000 persons/year

Annual average 2001-2004


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MALES Mortality

N Tx*

Stomach 338 7.9


Lung & Br. 1977 47.7

Skin melan. 138 3.3

Prostate 1302 28.6

Testis 15 0.4

Bladder 304 6.9

Brain CNS 239 6.1

NHLymphomas 295 7.0

Leukemias 275 6.5



Incidence

N Tx*

Stomach 473 7.6


Lung & Br. 2429 40.1

Skin melan. 845 15.6

Prostate 5446 89.0

Testis 403 9.6

Bladder 826 12.0

Brain CNS 277 5.8

NHLymphomas 660 11.8

Leukemias 459 8.9




X 2

X 5

X 3

X 20

X 1.5

X 1.5


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FEMALES Mortality

N Tx*

Stomach 222 3.5


Lung & Br. 795 15.9

Skin melan. 107 2.0

Breast 1361 25.5

Cervix 90 1.6

Bladder 150 2.2

Brain CNS 187 4.0

NHLymphomas 251 4.1

Leukemias 230 3.9


Incidence

N Tx*

Stomach 321 3.7


Lung & Br. 1124 16.5

Skin melan. 866 15.3

Breast 5285 85.0

Cervix 282 4.9

Bladder 257 2.7

Brain CNS 193 3.5

NHLymphomas 596 8.4

Leukemias 335 5.4





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Mortality Males Incidence


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Death

CertificatesPublic hospitals

& Private clinics

Individual physicians

Population data

(Office cantonalde la population)

Pathology

laboratories

Registry


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Relapse or disease-free,comorbidities, moving,

regular dead/alive status

Topography, Morphology,investigations, basis of

diagnosis, staging,comorbidity, treatments

Permanent identificationof patient, gender, birth,

address, civil status, and

SES (occupation, ?)

Data flow : requirements

Administrative

Clinical

Follow-up

RegistryIndividual file

Population

Hospitals, Clinics

Path labs

Others

Mortality

Sources


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Administrative

Clinical

Follow-up


RegistryIndividual file

Population

Hospitals, Clinics

Path labs

Others

Mortality

Sources

Comparability

ValidityAccuracy

Completeness


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Items collected in routine

Different levels in data collection purposes

1 = Incidence only (counting the cases)

2 = 1 + investigation + staging / extension at diagnosis

3 = 2 + treatment and active follow-up in routine for survival

data and analyses (monitoring quality of care)

Case ID and demographic characteristics Description of the disease at time of diagnosis Treatment within six months after diagnosis Ability to cross link regularly with mortality data, dead/alive status


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Minimum data set (level 1) : Ten core variablesfor defining an incident case

ID = number(s) identifying each tumour / each patient1. Gender

Ethnicity (?)2. Date of birth (day, month, year)3. Address / place of residence4. Date of reference for incidence (day, month, year)5. Method of first detection / mode of presentation6. Basis of diagnosis7. Topography, ICD-O(3)8. Laterality9. Morphology, ICD-O(3)10.Behaviour, ICD-O(3)


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Address and identification number

For estimating incidence, every cases innumerator must belong to denominator

To avoid duplicates Patient ID may have several Tumour ID : both

identifications are compulsory


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Incidence dateDefinition rules IACR

International Association of Cancer Registries

1. Date of first consultation/admission tohospital or clinical institution for the cancer

in question

2. Date of first pathology report

3. Date of first clinical diagnosis of a cancer by

a physician

4. Date ofdeath


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Incidence dateDefinition rules ENCR

European Network of Cancer Registries

1. Date of first pathology report

2. Date of first consultation/admission to

hospital or clinical institution for the cancerin question

3. Date of first clinical diagnosis of a cancer by

a physician

4. Date ofdeath (preceding autopsy if

performed)


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Incidence dateDefinition rules MECC

Middle East Cancer Consortium

1. Date of first clinical diagnosis of a cancer bya physician

2. Date of first pathology report or date of first

consultation/admission to hospital or

clinical institution for the cancer in question

3. Date of death (preceding autopsy if

performed)


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Incidence dateDefinition rules SEER

Surveillance and End Result - USA

1. Date of first clinical diagnosis (Physicalexamination, instrumental investigation)

2. Date of first pathology report or date of first

consultation/admission to hospital or

clinical institution for the cancer in question

3. Date ofdeath (preceding autopsy if

performed)


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Full dates of birth, diagnosis and death

If full dates are not available:

Some data quality control tests are disabled

Estimates of survival within the first month cannot bemade

Survival comparisons are affected by biases that do notarise with full dates : it is impossible to calculatecorrectly the probability of survival in the first month ortwo after diagnosis


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Mode of presentation

With symptoms

1.Clinical symptoms leading tocancer investigations

2.When investigating anotherdisease

3.Site specific code, if any

Other

4.Check-up, screening (selfattendance)

5.Death without autopsy6.Death with autopsy7.

Screening programme

8.Other screening9.Not known

Colon (C18)

7. Hemoccult +/- coloscopy

8. Coloscopy only

Breast (C50)

3. Self examination

7. Mammography +/- ultrasound

8. "clinical" screening only

Cervix (C53)

7. Pap test

8. Other

Prostate (C61)

7. Rectal investigation only

8. Any investigation + PSA

General Specific sites


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Basis of diagnosis

Macroscopic confirmation

1. Clinical diagnosis only

1. Clinically palpable tumour

2. Clinical + investigation with X-rays, ultrasound, MRI or otherimaging techniques

2. Endoscopy without histology or unspecified3. Surgical status without specimen

4. BiomarkersMicroscopic confirmation

5. Cytology/haematology

6. Biopsy, unspecified

7. Tumour biopsy or specimen based histology

8. Autopsy with histology


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Medium level of information (level 2)

Place of birth Marital status Urban/rural Nationality TNM items (see complete rules for coding) Other staging scheme items (SEER, ENCR, local,... ?) Condensed staging Prognostic factors (Dukes, Scarff-Bloom, Figo, Gleason, ) Number of nodes examined Number of positive nodes Final Stage according to TNM


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Staging

Staging describes the extent orseverity of an individual's cancer.

For solid tumours, the stage isbased on :

Location of the primary (original)tumour

Tumour size (T) Lymph node involvement (N) Presence or absence of

metastasis (M)

Currently an agreement between International Union Against Cancer(UICC), the American Joint Committee for Cancer (AJCC) and theInternational Federation of Gynaecology and Obstetrics (FIGO)ensures compatibility of staging classifications for gynaecologicalmalignancies as well as other cancers.


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TNM classification of malignant tumours

Clinical TNM & pathological pTNM pTNM is to be preferred when both are available.

Although the TNM system potentially apply to everyspecific solid tumour there are some specific "prognosticindexes" in use for specific tumours


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Example of TNM staging : Colon

Anatomical subsites ICD-O(3)

Appendix (C18.1) Caecum (18.0) Ascending colon (C18.2) Hepatic flexure (C18.3) Transverse colon (C18.4) Splenic flexure (C18.5) Descending colon (C18.6) Sigmoid colon (C18.7) Anal canal


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TNM staging for colon : Topography (T, pT)

Tx Primary tumour cannot beassessed

T0 No evidence of primary

Tis Carcinoma in situ : intra epithelialor invasion of lamina propria

T1 Tumour invades submucosa

T2 Tumour invades muscularis propria

T3 Tumour invades throughmuscularis propria into subserosaor into non-peritonealized pericolicor perirectal tissues

T4 Tumour directly invades otherorgans and structures and/orperforates visceral peritoneum


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TNM staging for colon : Nodal involvement (N, pN)

Regional lymph nodes

Nx Regional lymph nodes

cannot be assessed

N0 No regional lymph nodes

metastasis

N1 Metastasis in 1 to 3

regional lymph nodes

N2 Metastasis in 4 or more

regional lymph nodes


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UICC TNM based staging

Since 1943, the Sixth edition in2002

Most (but not all) solidtumours have a "stagegrouping" definition such as for

colon :

STAGE DESCRIPTION

0 In situ (non invasive)

IEarly local invasion, butno metastasis

IILimited local extensionand/or minimal regional

lymph node metastases

IIIExtensive local tumourand/or regional lymphnode metastases

IVLocally advanced tumourand/or distant metastases

0 Tis N0 M0

IT1 N0 M0

T2 N0 M0

IIT3 N0 M0

T4 N0 M0

III Any T N1 M0

Any T N2,N3 M0

IV Any T Any N M1


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Condensed TNM Classification (ENCR recommendations)http://www.encr.com.fr

Factor Description

T Primary tumour

L Localised

A Advanced

X Cannot be assessed

N Regional lymph nodes

0 No regional lymph node metastases

+ Presence of regional lymph node metastases


M Distant metastases

0 No distant metastases+ Presence of distant metastases



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The SEER "Extent of disease" classification in USA

The Extent of Disease (EOD) schemes consist of a 10-digit code for each and every cancer site.

This EOD is based on a combined clinical and operative/pathological assessment.

Compatibility with TNM system is stated. Information collected is very detailed and represents the

information needed to properly coding stage with the

TNM system.


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Site specific histopronostic grading

Skin melanoma : Clark, Breslow Colon Rectum : Dukes Gynaecologic tumours : FIGO Prostate : Gleason Bladder : Jewett Hodgkin disease Breast : Scarff-Bloom-Richardson, Nottingham,


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Skin melanoma : Breslow's and Clarks scales

Clarks Description

I Intra epidermal in situmelanoma

II T. penetrating into the

papillary dermisIII T. filling and expanding

the papillary dermis

IV T. penetrating thereticular dermis

V T. Penetrating intosubcutaneous fat

UICC Breslow (mm) Clark

pT1 1.5-4.0 IV

pT4 >4.0/satellites V


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Colon : Dukes classification

In Situ Dukes A Dukes B

Well

differentiated Undifferentiated

Different stages of invasion


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Breast : SBR, Nottingham, Elston-Ellis


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Breast : SBR, Nottingham, Elston-Ellis


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compared with UICC-TNM staging T

Tis (DCI)Tis (LCI)Tis (Paget)

Ductal carcinoma in situLobular carcinoma in situPaget disease of the nipple with no tumour

T1T1 mic

T1aT1b

T1c

Tumour 2cm or less in Greatest Dimension (GD)Microinvasion 0.1cm in GD

0.1 < GD 0.5 cm0.5 < GD 1.0 cm

1.0 < GD 2.0 cm

T2 2.0 < GD 5.0 cm

T3 5.0 cm < GD

T4

T4aT4bT4cT4d

Tumour of any size with direct extension to chest wall orskin only, as described in T4a to T4d

Extension to chest wallOedema, ulceration, satellite skin nodules on same breastBoth T4a and T4b, aboveInflammatory carcinoma


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FIGO system for gynaecologic tumours

FIGO T N M Description

0 Tis N0 M0 Carcinoma in situ (preinvasive carcinoma)

IA T1a N0 M0 Tumour limited to endometrium

IB T1b N0 M0 Less than one half of myometrium

IC T1c N0 M0 One half or more of myometrium

IIA T2a N0 M0 Endocervical glandular involvement only

IIB T2b N0 M0 Cervical stromal invasion

IIIA T3a N0 M0 Involvement of serosa, adnexa, peritoneum

IIIB T3b N0 M0 Vaginal involvement (direct or metastasis)

IIIC T1-3 N1 M0 Metastasis to pelvic, para-aortic, lymph nodes

IVA T4 Any N M0 Tumour invades bladder and/or bowel mucosa

IVB Any T Any N M1 Distant metastasis


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Medium level of information (level 2)

Differentiation grade ICD-O(3) Tumour size (mm) Site related additional information

o multifocalo Extra capsular invasiono e.g. : in situ in addition of invasive, hormonal receptorsand/or biomarkers

number of nodes with micro invasion, axillary dissection,ovariectomy (breast)

Date for first treatment Treatment (S, Rx, Ch, Horm) : y/n

Life status Date for life status


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Level 3 : additional detailed information

Dates for regular active follow-up (lost of FU) Relapse free survival (passive)

Aim of treatment Treatment status Treatment intensity Treatment (details) codes

Patient occcupation Husband's or wife's occupation Socio economic status


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Data collection processes : filters andcontrols for medical records


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Administrative

Clinical

Follow-up

Registry

Individual filePopulation

Hospitals, Clinics

Path labs

Others

Mortality

Sources

Comparability

ValidityAccuracy

Completeness


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Data flow : 1. active data collection

SourcesPopulation

Hospitals, Clinics

Path labs

Others

Mortality

Administrative

Clinical

Follow-up

Registry

Individual file


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Registry

Individual file

Administrative

Clinical

Follow-up

Data flow : 1. active data collection

Filters Coding

ControlPopulation

Hospitals, Clinics

Path labs

Others

Mortality

Sources Control


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Filters

Case ascertainment

= Eligibility fo beingrecorded

Consistency Malignancy Address

Coding

Medical coding

Primary Morphology Cause of death Matching and FU Cause of death


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Population

Hospitals, Clinics

Path labs

Others

Mortality

Data flow: 2. +/- advanced computerized systems

Sources

Filters

Coding

Control

Administrative

Clinical

Follow-up

Registry

Individual file


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http://www.naaccr.org

http://www.training.seer.cancer.gov/


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http://www.cdc.gov/cancer/npcr


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Answer :

"You must know the grade of Phyllode tumour

diagnosed in 1999. If grade I (9020/0) or grade 2(borderline 9020/1), then 2002 tumour isincident, because high grade (9020/3).

However, if it was a grade 3, it's a relapse grade2 in 2000, not a new tumour.

Invasive ductal carcinoma in 2000 was correctlycoded new tumour, because not in the same Berghistological group".

Question :

Clinical history :

"Phylloid tumour" in 1999 (surgery).Relapse in 2000, grade 2, and infiltrating ductalcarcinoma, SBR II, N+ (new tumour).

In 2002, "evolution of phylloid tumour, highgrade"

Which code ? relapse or new tumour ?


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Data from medical records (1)MVDINC200812100

Woman, born 18/09/1939

1. ../12/2008 (age 69)"primary site unknown (possible H&N)" C80.9

Carcinoma epidermod, poor differentiation 8070/3 3

Poor medical records, no information on investigations

2. 25/07/2011 (age 71)Biopsy cervix uterus C53.9

"Squamous carcinoma large cellnonkeratinizing, invasive" 8072/3 9

Final : second primary in 2011 or cervix in 2008 ?


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Data from medical records (2)MVDMORT20101113

Woman born 08/07/1937

Incidence ../10/2009 (age 72) "oncology committee 02/02/2010 Investigation : Ultrasound, Xrays, endoscopy, etc :

Colon stenosis C18.2

Biopsy : Signet ring cell adenocarcinoma, 8490/39"compatible with breast primary",hormonal receptor , axillary nodes

Mammography : nodules 12mm breast left 31/10/2009 Laparotomy : peritoneal carcinomatosis Final : Colon or breast ? Staging ?


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Data from medical records (3)MVDINC20089999

Woman born 31/03/1966 (age 46)

Gastric tumour C16.9 No clinical history, only one path report "Proceso epitelial atitpico papilar a nivel parietal

gastrico. Proceso quistico hepatico que presentaen revestimiento epitelial atipico de similarescaracteristicas. Metastasis de un adenocarcinomapapilar a nivel parietal gastrico y hepatico" 8260/39

Are Site and morphology correct ?


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Others verification processes ? 3 major advises :

1. Use the data (internal checking)

Simple frequencies in routine (3-4/year) and comparedwith previous years for

Number of incident cases /sources / sites

Morphologies / sources or registries

Age / sources / sex

Basis of diagnosis / source

Treatment / sources

others (free to add)

2. Use the data (registries network)

3. Use the data (research with clinicians)

3_data collection and coverage_lutz.pdf

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