Cancer Registries and Rare Cancers:Data quality and supplementary

information

Carmen Martínez-García.Granada Cancer Registry.

Andalusian School of Public Health. Spain

WP6 Second Meeting. Andalusian School of Public Health

Granada, 25 March 2009

WP6. Objectives

To assess the validity, completeness and inter-

registry standardisation of population-based

cancer registry data on rare cancers.

To improve the data quality and comparability

of incidence, prevalence and survival of rare

cancers among European population-based

cancer registries (PBCR).

WP6 Partners• Gemma Gatta, INT, Project Leader Italy

• Franco Berrino, INT, EUROCARE Italy

• Ricardo Capocaccia, ISS

Italy

• Stefano Ferreti FCR Italy

• Adriano Giacomin, BCR Italy

• Torgil Möller, Lund UH

Sweden

• Maja Primic Žakelj, IOL

Slovenia

• Jean Michel Lutz, NICER

Swizerland

• Juan A Virizuela (Oncologist), SAS Spain

• Ricardo González-Cámpora (Anatomopath), SAS

Spain

• María José Sánchez (Epidemiologist), EASP

Spain

•Juan Manuel Melchor, EASP Spain

• Carmen Martínez García, EASP

SpainSamba Sowe INT

• To select the same data quality indicators

from the PBCR participating in RARECARE

• To be able to interpret the variability in

incidence and survival among these PBCR

• To propose actions that improve the data’s

quality and comparability

What do we want?

Data Quality.WP6

Indicators used to evaluate completeness and validity in cancer registries:

• Basis of diagnosis

• %Microscopically verified cases

• %Clinical diagnosis

• %Unknwon

• %Death Certificate only

• %Autopsies

Data Quality

• Unknown primary site: C80.0

• Ill-defined site: C55.9 (uterus); C76.- (Thorax,…)

• Ill-defined subsite: 4th digit 8 and 9

• Morphology NOS ( 8000/3, 8001/3, 8010/3...)

• Pathological review of specific cases/markers?

• Follow up indicators ?

Data Quality WP6

What have we done until now?

To calculate indicators on basis of diagnosis for some

layer 1 categories:

• Epithelial: C30-31, C11, C07- C08

• Mesothelioma

• Central Nervous system: Glial, Non glial, Meningioma

• By registry, country and region

Data QualityEpithelial Tumour of the Nasal Cavity and Sinuses, by

country. 1995-2002

0% 20% 40% 60% 80% 100%

AUSTRIA

FRANCE

ICELAND

ITALY

NETHERLAND

POLAND

SLOVENIA

SWEDEN

UK_ENGLAND

UK_SCOTLAND

MC

CD

UK

Data QualityEpithelial Tumour of the Nasal Cavity and Sinuses, by Area.

1995-2002

0% 20% 40% 60% 80% 100%

Northern Europe

Central Europe

Eastern Europe

Southern Europe

UK and Northern Ireland

EU Overall

MC

CD

UK

Data QualityGlial Tumour of the CNS and Pineal Gland, by country.

1995-20020% 20% 40% 60% 80% 100%

AUSTRIA

BELGIUM

FRANCE

GERMANY

ICELAND

IRELAND

ITALY

MALTA

NETHERLAND

NORWAY

POLAND

PORTUGAL

SLOVENIA

SPAIN

SWEDEN

SWITZERLAND

UK_ENGLAND

UK_NORTHERN_IRELAND

UK_SCOTLAND

UK_WALES

MC

CD

UNK

Data QualityGlial Tumour of the CNS and Pineal Gland, by Area.

1995-2002

0% 20% 40% 60% 80% 100%

Northern Europe

Central Europe

Eastern Europe

Southern Europe

UK and Northern Ireland

EU Overall

MC

CD

UNK

Data Quality WP6

What have we done until now?

• To “explore” the ill defined sites

• By registry and country

• To “explore” the morfology NOS

• By registry

Data Qualityill-defined sites

Numerador Numerator

Overlapping lesion of other and unspecified parts of mouth and Mouth,NOS 6.8-6.9

Hypopharynx,NOS 13.9

Pharynx,NOS and Overlapping lesion of lip, oral cavity and pharynx 14.0-14.8

   

Overlapping lesion of rectum, anus and anal canal 21.8

Intestinal tract, NOS and Gastrointestinal tract, NOS 26.0-26.9

Overlapping lesion of heart, mediastinum, and pleura 38.8

Upper respiratory tract, NOS-ILL-defined withing respiratory system 39.0-39.9

   

Uterus, NOS 55.9

Overlapping lesion of female genital organs- Female genital tract, NOS 57.8-57.9

Overlapping lesion of male genital organs- Male genital tract, NOS 63.8-63.9

Overlapping lesion of urinary organs-Urinary system, NOS 68.8-68.9

   

Overlapping lesion of brain and central nervous system-Nervous system, NOS 72.8-72.9

Overlapping lesion of endocrine glands and related structures-Endocrine gland, NOS 75.8-75.9

Head, face or neck, NOS- Overlapping lesion of ill-defined sites 76.0-76.8

Unknown primary site 80.9

Data Qualityill-defined sites. Number of incident cases and percentage by

site and Registry. 1995-2002

Site

Registry

06.8-06.9 13.9

14.0-14.8 21.8

26.0-26.9 38.8

39.0-39.9 55.9

57.8-57.9

63.8-63.9

68.8-68.9

72.8-72.9

75.8-75.9

76.0-76.8 80.9 Total

Austria 183 753 157 52 207 3 1 470 91 10 256 70 11 623 11.126 Belgium Flemish 154 118 126 12 68 7 2 237 33 4 79 8 4 364 6.125 France Bas Rhin 6 24 41 1 5 0 0 8 1 0 2 3 0 9 365

Calvados 1 5 5 0 0 2 0 5 1 0 1 0 0 11 144

Calvados Digestive 0 0 0 9 9 0 0 0 0 0 0 0 0 0 31

Cote d’Or Digestive 0 0 0 0 8 0 0 0 0 0 0 0 0 0 0

Cote d’Or Hematopoietic 0 0 0 0 2 0 0 0 0 0 0 0 0 7 2

Site

Registry

06.8-06.9 13.9

14.0-14.8 21.8

26.0-26.9 38.8

39.0-39.9 55.9

57.8-57.9

63.8-63.9

68.8-68.9

72.8-72.9

75.8-75.9

76.0-76.8 80.9

Austria 6,20 71,44 2,20 0,37 0,27 0,42 0,00 3,80 0,43 25,64 1,03 1,45 0,25 0,20 3,65

Belgium Flemish

8,82

28,16

3,33

0,19

0,22

0,89

0,01

4,27

0,37

0,02

0,82

0,37

0,39

0,25

4,23

France Bas Rhin

1,78

10,17

4,75

0,21

0,16

0,00

0,00

1,62

0,12

0,00

0,19

1,58

0,00

0,07

2,78

Calvados 0,51 4,00 0,93 0,00 0,00 4,88 0,00 1,90 0,23 0,00 0,19 0,00 0,00 0,19 2,53

Calvados Digestive 0,00 0,00 0,00 1,91 0,33 0,00 0,00 0,00 0,00 0,00 0,00 0,00 0,00 0,00 1,11

Cote d’Or Digestive 0,00 0,00 0,00 0,00 0,18 0,00 0,00 0,00 0,00 0,00 0,00 0,00 0,00 0,00 0,00

Cote d’Or Hematopoietic 0,00 0,00 0,00 0,00 2,60 0,00 0,00 0,00 0,00 0,00 0,00 0,00 0,00 0,37 0,11

Data Quality WP6

Morphology NOS

Data Quality

Data Quality.WP6

Proposal of short list of rare cancers of high priority:

• Mesothelioma: primary prevention

• Angiosarcoma of the liver: primary prevention

• Sarcoma: diagnostic accuracy

• Oral cavity: secondary prevention

• CNS: appropiateness of treatment

• Germ cell tumours: appropiateness of treatment

• Leukaemia: appropiateness of treatment

• Endocrine tumours: data quality

Other sugestions for quality control?

Data Quality Report. WP6

The report will include:

• Results on quality control of rare cancers

• complet list

• priority list

• List of markers that may improve the accuracy of the diagnosis of selected cancers

• Proposal for improving the quality and comparability in terms of completeness and validity

The Report (D15) will be done by October 2009

Data Quality Seminar. WP6Seminar on classification and coding problems for selected rare cancers addressed to profesionals linked with population-based cancer registries.

Linked with WP4 and WP5

Collaboration with:

• European Network of Cancer Registries

• Northern Cancer Registries

• Groupe pour l’Epidemiologie et l’Enregistrement du Cancer dans les Pays de Langue Latine (GRELL)

The seminar will be due by April 2010

Difficulties studying rare cancers:

quality and comparability • Low number of cases: random variations in incidence and survival, as well as in quality indicators, for small registries

• Some cancers are new entities that need:

• technology for diagnosis (laboratory, imaging...)

• training of professionals

• training of registrars

• Some morphological entities in ICD-O-3 don’t exist in ICD-O-1 or ICD-O-2.

Comparing data from

Population-based

Cancer Registries: Art

or Science?

Comparing data from population- based cancer

registriesSome aspects to be taken into account when interpreting results from PBCR

• Socioeconomic conditions and health system in the region

• Definition of incident case: /0, /1, /2 and /3

• Rules for collecting coding and classifying data

• The “traditional” quality indicators

• Consider for each age group, site or morphology the circumstances that may be affected by a selection bias

When comparing data “each tumour” or group of

tumours must be studied using different

approaches; taking into account age, risk

factors, diagnostic resources (more or less

advanced technology), treatment (new drugs,

specialized centres for treatment), screening

programs in the region (neuroblastoma in

children) and other circumstances that may

influence incidence and survival

Considerations

Some sites with special problems• Bladder cancer

– Not enough tissue for diagnosis of invasion: /2 or /3 ?– Different criteria for coding the cases /1, /2 /3

• Ovary cancer – Borderline tumours: /1 in ICD-O-1, /3 in ICD-O-2

• Neurological/ Intracranial tumours– Inclusion of /0, /1 and /3 or only /3

• Uveal melanoma– Underascertainment when surgery is not performed