Purpose: Rare cancers represent 22% of all tumors in Europe; however, the quality of the data of rare cancers may not be as good as the quality of data for common cancer. The project surveillance of rare cancers in Europe (RARECARE) had, among others, the objectve of assessing rare cancer data quality in populaton-based cancer registries (CRs). Eight rare cancers were considered: mesothelioma, liver angiosarcoma, sarcomas, tumors of oral cavity, CNS tumors, germ cell tumors, leukemia, and malignant digestve endocrine tumors. Methods: We selected data on 18,000 diagnoses and revised, on the basis of the pathologic and clinical reports (but not on pathologic specimens), unspecified morphology and topography codes originally atributed by CR officers and checked the quality of follow-up of long-term survivors of poor prognosis cancers. Results: A total of 38 CRs contributed from 13 European countries. The majority of unspecified morphology and topography cases were confirmed as unspecified. The few unspecified cases that, after the review, changed to a more specific diagnosis increased the incidence of the common cancer histotypes. For example, 11% of the oral cavity epithelial cancers were reclassified from unspecified to more specific diagnoses: 8% were reclassified as squamous cell carcinoma (commoner) and only 1% as adenocarcinoma (rarer). The revision confirmed the majority of long-term survivors revealing a relatve high proporton of mesothelioma long-term survivors. The majority of appendix carcinoids changed behavior from malignant to borderline lesions. Conclusions: Our study suggests that the problem of poorly specified morphology and topography cases is mainly one of difficulty in reaching a precise diagnosis. The awareness of the importance of data quality for rare cancers should increase among registrars, pathologists, and clinicians.
Data quality in rare cancers registraton: The report of the RARECARE data quality study / Trama, A.; Marcos-Gragera, R.; Perez, M. J. S.; van der Zwan, J. M.; Ardanaz, E.; Bouchardy, C.; Melchor, J. M.; Martinez, C.; Capocaccia, R.; Vicentini, M.; Siesling, S.; Gatta, G.; Zielonk, N.; Van Eycken, E.; Henau, K.; Magi, M.; Bouvier, A. M.; Jooste, V.; Faivre, J.; Maynadie, M.; Manivet, I.; Comber, H.; Deady, S.; Bellu, F.; Dal Cappello, T.; Ferretti, S.; Vercelli, M.; Quaglia, A.; Federico, M.; Cirilli, C.; Fusco, M.; Michiara, M.; Sgargi, P.; Giacomin, A.; Tumino, R.; Cilia, S.; Spata, E.; Mangone, L.; Cinzia, S.; Falcini, F.; Giorgetti, S.; Piffer, S.; Franchini, S.; Crocetti, E.; Caldarella, A.; Tagliabue, G.; Zambon, P.; Fiore, A. R.; Dei Tos, A. P.; De Angelis, R.; England, K.; Gozdz, S.; Mezyk, R.; Zwierko, M.; Bielska-Lasota, M.; Slowinski, J.; Primic-Zakelj, M.; Skrlec, F.; Mateos, A.; Bidaurrazaga, J.; Galceran, J.; Diaz Garcia, J. M.; Martinez-Garcia, C.; Sanchez Perez, M. J.; Adolfsson, J.; Usel, M.; Ess, S. M.; Spitale, A.; Bordoni, A.; Konzelmann, I.; Visser, O.; Otter, R.; Siesling, S.. - In: TUMORI. - ISSN 0300-8916. - 103:1(2017), pp. 22-32. [10.5301/tj.5000559]
Data quality in rare cancers registraton: The report of the RARECARE data quality study
Federico M.;
2017
Abstract
Purpose: Rare cancers represent 22% of all tumors in Europe; however, the quality of the data of rare cancers may not be as good as the quality of data for common cancer. The project surveillance of rare cancers in Europe (RARECARE) had, among others, the objectve of assessing rare cancer data quality in populaton-based cancer registries (CRs). Eight rare cancers were considered: mesothelioma, liver angiosarcoma, sarcomas, tumors of oral cavity, CNS tumors, germ cell tumors, leukemia, and malignant digestve endocrine tumors. Methods: We selected data on 18,000 diagnoses and revised, on the basis of the pathologic and clinical reports (but not on pathologic specimens), unspecified morphology and topography codes originally atributed by CR officers and checked the quality of follow-up of long-term survivors of poor prognosis cancers. Results: A total of 38 CRs contributed from 13 European countries. The majority of unspecified morphology and topography cases were confirmed as unspecified. The few unspecified cases that, after the review, changed to a more specific diagnosis increased the incidence of the common cancer histotypes. For example, 11% of the oral cavity epithelial cancers were reclassified from unspecified to more specific diagnoses: 8% were reclassified as squamous cell carcinoma (commoner) and only 1% as adenocarcinoma (rarer). The revision confirmed the majority of long-term survivors revealing a relatve high proporton of mesothelioma long-term survivors. The majority of appendix carcinoids changed behavior from malignant to borderline lesions. Conclusions: Our study suggests that the problem of poorly specified morphology and topography cases is mainly one of difficulty in reaching a precise diagnosis. The awareness of the importance of data quality for rare cancers should increase among registrars, pathologists, and clinicians.
Pubblicazioni consigliate
I metadati presenti in IRIS UNIMORE sono rilasciati con licenza Creative Commons CC0 1.0 Universal, mentre i file delle pubblicazioni sono rilasciati con licenza Attribuzione 4.0 Internazionale (CC BY 4.0), salvo diversa indicazione.
In caso di violazione di copyright, contattare Supporto Iris
