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Cancer Registries and Rare Cancers: Data quality and supplementary information

Cancer Registries and Rare Cancers: Data quality and supplementary information. WP6 Second Meeting. Andalusian School of Public Health Granada , 25 March 2009. Carmen Martínez-García. Granada Cancer Registry. Andalusian School of Public Health. Spain. WP6. Objectives.

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Cancer Registries and Rare Cancers: Data quality and supplementary information

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  1. Cancer Registries and Rare Cancers:Data quality and supplementary information WP6 Second Meeting. Andalusian School of Public Health Granada, 25 March 2009 Carmen Martínez-García. Granada Cancer Registry. Andalusian School of Public Health. Spain

  2. WP6. Objectives To assess thevalidity, completenessand inter-registry standardisationof population-based cancer registry data on rare cancers. To improve the data quality and comparability ofincidence, prevalence and survivalof rare cancers among European population-based cancer registries (PBCR).

  3. 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 Spain • Samba Sowe INT

  4. What do we want? • To select the same data quality indicators from the PBCR participating in RARECARE • To be able to interpret thevariability in incidence and survival among these PBCR • To propose actions that improve the data’s quality and comparability

  5. 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

  6. 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 ?

  7. 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

  8. Data QualityEpithelial Tumour of the Nasal Cavity and Sinuses, by country. 1995-2002

  9. Data QualityEpithelial Tumour of the Nasal Cavity and Sinuses, by Area. 1995-2002

  10. Data QualityGlial Tumour of the CNS and Pineal Gland, by country. 1995-2002

  11. Data QualityGlial Tumour of the CNS and Pineal Gland, by Area. 1995-2002

  12. 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

  13. Data Qualityill-defined sites

  14. Data Qualityill-defined sites. Number of incident cases and percentage by site and Registry. 1995-2002

  15. Data Quality WP6Morphology NOS

  16. Data Quality

  17. 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?

  18. 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 comparabilityin terms of completeness and validity • The Report (D15) will be done by October 2009

  19. Data Quality Seminar. WP6 • Seminar 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

  20. Difficulties studying rare cancers: quality and comparability • Low number of cases: random variations in incidence and survival, as well as in quality indicators, for smallregistries • 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.

  21. Comparing data from Population-based Cancer Registries: Art or Science?

  22. Comparing data from population- based cancer registries • Some 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

  23. Considerations 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

  24. 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 Some sites with special problems

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