Advertisement

Data quality in rare cancers registration: the report of the RARECARE data quality study

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 objective of assessing rare cancer data quality in population-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 digestive 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 attributed 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 relative high proportion 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.

Tumori 2017; 103(1): 22 - 32

Article Type: ORIGINAL RESEARCH ARTICLE

DOI:10.5301/tj.5000559

Authors

Annalisa Trama, Rafael Marcos-Gragera, Maria Josè Sánchez Pérez, Jan Maarten van der Zwan, Eva Ardanaz, Christine Bouchardy, Juan Manuel Melchor, Carmen Martinez, Riccardo Capocaccia, Massimo Vicentini, Sabine Siesling, Gemma Gatta, and the RARECARE working group contributing to the data quality study

Article History

Disclosures

Financial support: This research was supported by the European Commission through the Executive Agency for Health and Consumers (grant 2006113) and the Programma Italia-USA Malattie Rare (grant 526D/42). The funding sources had no role in study design, data collection, data analysis, data interpretation, writing this report, or the decision to submit for publication.
Conflict of interest: None of the authors has conflict of interest with this submission.

This article is available as full text PDF.

  • If you are a Subscriber, please log in now.

  • Article price: Eur 36,00
  • You will be granted access to the article for 72 hours and you will be able to download any format (PDF or ePUB). The article will be available in your login area under "My PayPerView". You will need to register a new account (unless you already own an account with this journal), and you will be guided through our online shop. Online purchases are paid by Credit Card through PayPal.
  • If you are not a Subscriber you may:
  • Subscribe to this journal
  • Unlimited access to all our archives, 24 hour a day, every day of the week.

Authors

Affiliations

  •  Evaluative Epidemiology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan - Italy
  •  Epidemiology Unit and Girona Cancer Registry, Oncology Coordination Plan, Department of Health, Girona Biomedical Research Institute, Girona - Spain
  •  Escuela Andaluza de Salud Pública. Instituto de Investigación Biosanitaria ibs.GRANADA. Hospitales Universitarios de Granada/Universidad de Granada, Granada - Spain
  •  CIBER de Epidemiología y Salud Pública (CIBERESP) - Spain
  •  Department of Research, Comprehensive Cancer Centre The Netherlands, Utrecht - The Netherlands
  •  Instituto de Salud Pública de Navarra, Pamplona - Spain
  •  Geneva Cancer Registry, Institute of Global Health, Faculty of Medicine, University of Geneva, Geneva - Switzerland
  •  Centro Nazionale di Epidemiologia, Sorveglianza e Promozione della Salute (CNESPS), Istituto Superiore di Sanità, Rome - Italy
  •  Servizio Interaziendale di Epidemiologia, Azienda Unità Sanitaria Locale and IRCCS, Arcispedale Santa Maria Nuova, Reggio Emilia - Italy
  •  Department of Health Technology and services research, MIRA Institute for Biomedical Technology and Technical Medicine, University of Twente, Enschede - The Netherlands

Article usage statistics

The blue line displays unique views in the time frame indicated.
The yellow line displays unique downloads.
Views and downloads are counted only once per session.

No supplementary material is available for this article.