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Cancer registries and rare cancers: quality of data, supplementary information

Cancer registries and rare cancers: quality of data, supplementary information RARECARE WP6 3rd meeting National Institute of Public Health Warsaw 25th March 2010. RARECARE data quality study on high priority rare cancers (Gemma Gatta, Annalisa Trama). Objectives.

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Cancer registries and rare cancers: quality of data, supplementary information

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  1. Cancer registries and rare cancers: quality of data, supplementary information RARECARE WP6 3rd meeting National Institute of Public Health Warsaw 25th March 2010 RARECARE data quality study on high priority rare cancers (Gemma Gatta, Annalisa Trama)

  2. Objectives • To verify the diagnostic accuracy • To assess the completeness of incidence • To verify the quality of follow-up • To verify the availability of information on stage, treatment and place of treatment To improve the estimates of incidence and survival

  3. Short list • Mesothelioma • Liver angiosarcoma • Sarcomas • Tumors of oral cavity • SNC tumours • Germ cell tumours • Leukemia • Endocrine tumours Primary prevention Diagnostic accuracy Secondary prevention Quality of care Data quality

  4. Methods • Revision of the clinical dossiers, pathologic reports filed at cancer registry offices • Revision of the follow-up only for mesothelioma, angiosarcoma of the liver and CNS tumours • Period of diagnosis: 1995-2002

  5. 33 CRs from 14 countries

  6. Mesothelioma Issues for data quality • Diagnostic accuracy • Quality of follow-up

  7. Mesothelioma, 3-year relative survival by registry EUROCARE-4 Registry that revised the data are marked with the red arrow

  8. Mesothelioma revision • The review focused on • mesothelioma long term survivors (9050-9053) of any sites (to verify the diagnostic accuracy and quality of follow-up) • all cases with pleural cancers ≠mesothelioma • (to ascertain the completeness of incidence mesothelioma of the pleura)

  9. Mesotelioma long survivors • Cancer registries participating = 29 • No. of mesothelioma long survivors revised = 551 (32% F; 68% M) Results of the morphology check • 95% (524/551) were confirmed mesothelioma of (pleura, peritoneum, other male genital organs, unknown primary) • 5% (27/551) were not mesothelioma. In details: • 8 adk (colon, lung, breast, ovary) • 6 neoplasm, NOS (lung, pleura, ovary) • 3 sarcomas (lung, bone, thyroid gland) • 1 lymphoma • 9 (benign, border line, error)

  10. Mesothelioma long survivors Results of the life status check • 455/551 (83%) confirmed asmesothelioma long survivors • 318 (70%) M; 137 (30%) F • 68/551 (12%) were mesothelioma not long survivors • 22 lost to follow-up • 46 death date changed • 23/551 (4%) were not mesothelioma long survivors

  11. Pleura cancers ≠mesothelioma • Cancer registries participating = 29 • No. of cases revised = 681 (58% M, 42% F)

  12. Pleural cancers ≠mesothelioma • 216/681 (32%) not pleura cancers • 87 = adk (digestive, respiratory, female genital, urinary, unknown primary) • 67 = neoplasms, NOS (digestive tract, respiratory system, female gen organs, unknown primary) • 26 = hematopoietic • 9 = squamous cell (respiratory, urinary tract) • 9 = sarcomi (respiratory, skin, soft tissue, unknown primary) • 55 = benign • 2 = records not reviewed Results of the morphology check • 465/681 (68%) pleura cancers • 323 = neoplasms, NOS • 47 = mesotheliomas • 34 = sarcomas • 56 = adk • 5 = squamous cell

  13. Malignant digestive endocrine tumour (MDET) Issues for data quality • Diagnostic accuracy (difficulties in distinguish tumors with different prognosis) • Undifferentiated small-cell MDET • (8041/3) and (8042/3) • Well-differentiated MDET • (8150/3), (8151/3), (8153/3), (8155/3), (8152/3), (8246/3), (8240/3, 8241/3, 8243/3, 8244/3) • Behaviour (carcinoids)

  14. MDET • The review focused on • undifferentiated(8020/3) and anaplastic (8021/3) carcinomas of the digestive tract (C15 to C25) (to find small cell MDET) • all carcinoids (8240-8244)of the digestive tract (C15 to C25) (to verify the behaviours) Criteria for defining the behaviour of carcinoids: Invasion of the muscularis propria Dimension of the tumour

  15. Behavior: /1 /3 /3

  16. Carcinoids (behavior) • Cancer registries participating = 21 • No. of cases revised = 1672 • Information for defining the behavior: available for ONLY 223 cases • Behavior defined only if both dimension of the tumor and local invasion were available

  17. Carcinoids (behaviour): results

  18. Undifferentiated and anaplastic carcinomas • Cancer registries participating = 26 • No. of cases revised = 844 Results of the morphology check

  19. Central Nervous System tumours Issues for data quality • Diagnostic accuracy • Quality of follow-up

  20. CNS tumours 5-year relative survival from 27% to 16% >20% (Finland, Iceland, Norway, Ireland, Wales, Austria, Belgium, Germany, Switzerland, Portugal) source: Sant et al, EJC, 2008

  21. CNS tumours revision • The review focused on • Long-term survivors with a diagnosis of unspecified morphology codes (8000, 8001, 8010) (to verify the diagnostic accuracy and quality of follow-up) • Cases with diagnosis of Glioma NOS (9380) microscopically verified • (to verify the diagnostic accuracy for tumours with treatment options)

  22. CNS tumours long survivors • Cancer registries participating = 22 • No. of brain cancers long survivors revised = 705 (53% F; 47% M) Results of the morphology check • 93% (653/705) were confirmed brain tumours • 544 = neoplasms NOS • 44 = astrocitomi • 6 = oligodendroglial • 6 = non glial/embryonal tumurs • 2 = ependimal tumours • 1 = sarcoma • 47 = not malignant • 3 = epithelial neoplasms, NOS • 5% (27/551) were not mesothelioma. In details: • 8 adk (colon, lung, breast, ovary) • 6 neoplasm, NOS (lung, pleura, ovary) • 3 sarcomas (lung, bone, thyroid gland) • 1 lymphoma • 9 (benign, border line, error)

  23. CNS tumours long survivors Results of the morphology check • 7% (52/705)were not brain tumours • 17 = meningiomas • 4 = sarcomas • 3 = neoplasms, NOS • 2 = lung tumours (1epithelial and 1 squamous cell neoplasm) • 2 = breast adk • 2 = lymphomas • 2 = ependimal tumours • 1 = skin melanoma • 1 = endocrine glands germinoma • 1= spinal cord astrocitoma • 11 = not malignant • 8 = information not available

  24. CNS tumours long survivors Results of the life status check • 343/705 (49%) confirmed as real long survivors • Real brain tumors survivors 282/705 (40%) • Not brain tumours long survivors 61/705 (9%) • 337/705 (48%) were brain tumours not long survivors • 124 lost to follow-up • 213 death date changed For 25 cases (3%) the information on the follow-up was missing. It has to be verfied with CRs

  25. Glioma, NOS • Cancer registries participating = 21 • No. of cases revised = 472 (55% M, 45% F) 96 cases of brain tumours will contribute to modify incidence and survival of the second layer entities

  26. Gonadal germ cell tumours Issues for data quality • Diagnostic accuracy for tumors with treatment options (% of morphology codes, NOS)

  27. Gonadal germ cell tumours • The review focused on: • morphology NOS (8000-8010) cases of the testis and of the ovary. ONLY microscopically verified cases

  28. Gonadal germ cell tumours (1) • Cancer registries participating = 25 • No. of cases revised = 1829 Results of the morphology check • 89% (1629) were confirmed unspecified morphology of female and male genital organs • 2.3% (41) = non epithelial tumors ovary/testis • 23 = germ cell tumours (19 testis; 4 ovary) • 12 = sex cord tumors of the ovary • 6 = malignant/immature teratomas (2 ovary, 4 testis)

  29. Gonadal germ cell tumours (2) Results of the morphology check (2) • 5.96% (109) = adk (stomach, breast, 105 ovary, prostate, 1 testis) • 1.53% (28) = other epithel neoplasms, NOS of the ovary and testis • 0.16% (3) = squamous cell ca ovary • 0.16% (3) = mixed epithel/mesench tumor of the ovary • 0.11% (2) = sarcomas (soft tissue and ovary) • 0.05% (1) = transitional cell carcinomas of the bladder • 0.05% (1) = mesothelioma • 0.05% (1) = ependimoma of the brain • 0.05% (1) = lymphoma • 0.44% (8) = benign tumours • 0.11% (2) = deleted The revision identified 23/1829 (1.2%) germ cell tumors

  30. Ovary and Testis

  31. Liver angiosarcoma With morphology different from colangio/hepatocellularcarcinoma, hepatoblastoma. Sarcoma NOS Angiosarcoma long survisors (>1yr)

  32. Angiosarcoma, long survivors 4 CRs identified long survivors 13 long survivors 6 long survivors (2m, 4f) (range: 16 months-11years) 5 cases were lost to follow-up, 2 survived <1years

  33. Liver, sarcoma NOS 8 CRs identified sarcoma NOS (18 cases checked)

  34. 1306 cases checked (29 CRs) 1134 cases of liver (87%) Epithelial tumor of theliver, morphology not typical None angiosarcoma

  35. 1306 cases checked (29 CRs) 172 cases ≠ of liver (13%) Epithelial tumor of theliver, morphology not typical

  36. Sarcomas Pathological diagnosis is not easy Delay in diagnosis and treatment Checks of Sarcoma NOS or descriptive codes (8800, 8801-6)

  37. % Sarcoma NOS by registry Registry that verified the data are marked with the red arrow

  38. Sarcomas

  39. SarcomasSarcomas different codes No sarcomas

  40. Sarcoma NOS before and after the revision CRs

  41. Leukaemia Two major types: typical and atypical CML with different prognosis Revision of the unspecified codes of leukaemia and CML, NOS (9800-1, 9820, 9860, 9863)

  42. CML, NOS

  43. Other leukaemia/lymphoma(55 cases)

  44. Leukaemia, NOS

  45. Other leukaemia/lymphoma(219 cases, 15%)

  46. % of leukaemia NOS by registry (average 6%)

  47. Tumours of oral cavity Issues for data quality • Diagnostic accuracy • Morphology: neoplasms, NOS and carcinoma NOS (ICD-O 8000, 8001, 8010, 8011) • Topography: tongue overlapping lesion (C2.8) and palate, NOS (C5.9) Both subsites are in oropharynx Morphology NOS are in the layer 1 entity

  48. Tumours of oral cavityrevision • The review focused on • morphology codes 8000, 8001, 8010, 8011 (carcinoma NOS) of the oral cavity (to verify the diagnostic accuracy) C02.0-C02.3, C02.9, C03.0-C05.0, C06.0-C06.9 dorsal and ventral surface of the tongue, border of the tongue, anterior 2/3 of tongue,.gum, floor of mouth, …mouth NOS C01.9, C02.4, C02.8, C05.1-C05.2, C05.9, C09.0-C10.3, C10.8-10.9, C14.2 base of tongue, lingual tonsil, tongue overlapping, soft palate, uvula, palate, NOS,…Waldeyer ring. • unspecific site codes C02.8 (overlapping lesion of the tongue) and C05.9 (palate, NOS) (to distinguish between oral cavity and oropharynx) Oral cavity Oropharynx 5-year survival: oropharynx = 37% oral cavity = 59%

  49. Carcinoma, NOS • Cancer registries participating = 26 • No. of cases revised = 555 (68% M, 32% F) Results of the morphology check

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