Original Paper

Cancer Causes & Control

, Volume 20, Issue 5, pp 751-756

First online:

Cancer registration data and quality indicators in low and middle income countries: their interpretation and potential use for the improvement of cancer care

  • Maria Paula CuradoAffiliated withDescriptive Epidemiology Production Group, Biostatistics and Epidemiology Cluster, International Agency for Research on Cancer (IARC) Email author 
  • , Lydia VotiAffiliated withDescriptive Epidemiology Production Group, Biostatistics and Epidemiology Cluster, International Agency for Research on Cancer (IARC)
  • , Ana Maria Sortino-RachouAffiliated withHospital 9 de Julho

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Abstract

Cancer registration data plays a major role in the design and monitoring of cancer control activities and policies, and population-based cancer registries (PBCR) are the main source of information. In developed countries, the healthcare infrastructure enables the registration of quality cancer data. In low and middle Income countries (LMIC), where health care facilities are limited or scarce, cancer registration data may be of low quality. The aim of this article is to demonstrate the value of cancer incidence data for LMIC, even when quality is questionable, as well as to attempt to interpret the messages that the quality indicators convey both for cancer registration and the healthcare system. The study of data submitted to the Cancer incidence in five continents, volume nine (CI5-IX) leads to the conclusion that when PBCR from LMIC cannot provide good quality data it may indicate a deficiency that goes above and beyond the registrar ability. The quality control indicators evaluated provide insight on local conditions for cancer diagnosis and care. Low data quality not only signals lack of collaboration among reporting sources and the inability of the registrar to perform quality abstracting, but also points to specific weaknesses of the cancer care system and can guide improvement goals and efforts.

Keywords

Epidemiology Incidence studies Cancer Low income population Registries