Anton Ryzhov1, Freddie Bray2, Jacques Ferlay2, Zoya Fedorenko3, Liudmyla Goulak3, Yevgeniy Gorokh3, Olena Soumkina3, Ariana Znaor4. 1. National Cancer Registry of Ukraine, Ukrainian National Cancer Institute, Kyiv, Ukraine; Taras Shevchenko National University of Kyiv, Ukraine; Cancer Surveillance Section, International Agency for Research on Cancer, Lyon, France. 2. Cancer Surveillance Section, International Agency for Research on Cancer, Lyon, France. 3. National Cancer Registry of Ukraine, Ukrainian National Cancer Institute, Kyiv, Ukraine. 4. Cancer Surveillance Section, International Agency for Research on Cancer, Lyon, France. Electronic address: znaora@iarc.fr.
Abstract
BACKGROUND: Cancer notification has been mandatory in Ukraine since 1953, with the National Cancer Registry of Ukraine (NCRU) established in 1996. The aim of this study was to provide a comprehensive evaluation of the data quality at the NCRU. METHODS: Qualitative and semi-quantitative methods were used to assess the comparability, completeness, validity and timeliness of cancer incidence data from the NCRU for the period 2002-2012. RESULTS: Cancer registration procedures at the NCRU are in accordance with international standards and recommendations. Semi-quantitative methods suggested the NCRU's data was reasonably complete, although decreases in age-specific incidence and mortality rates in the elderly indicated some missing cases at older ages. The proportion of microscopically-verified cases increased from 73.6% in 2002 to 82.3% in 2012, with death-certificate-only (DCO) proportions stable at around 0.1% and unknown stage recorded in 9.6% of male and 7.5% of female solid tumours. Timeliness was considered acceptable, with reporting >99% complete within a turn-around time of 15 months. CONCLUSION: While timely reporting of national data reflects the advantages of a mandatory data collection system, a low DCO% and observed age-specific declines suggest possible underreporting of incidence and mortality data, particularly at older ages. Overall, the evaluation indicates that the data are reasonably comparable and thus may be used to describe the magnitude of the cancer burden in Ukraine. Given its central role in monitoring and evaluation of cancer control activities, ensuring the sustainability of NCRU operations throughout the process of healthcare system reform is of utmost importance.
BACKGROUND:Cancer notification has been mandatory in Ukraine since 1953, with the National Cancer Registry of Ukraine (NCRU) established in 1996. The aim of this study was to provide a comprehensive evaluation of the data quality at the NCRU. METHODS: Qualitative and semi-quantitative methods were used to assess the comparability, completeness, validity and timeliness of cancer incidence data from the NCRU for the period 2002-2012. RESULTS:Cancer registration procedures at the NCRU are in accordance with international standards and recommendations. Semi-quantitative methods suggested the NCRU's data was reasonably complete, although decreases in age-specific incidence and mortality rates in the elderly indicated some missing cases at older ages. The proportion of microscopically-verified cases increased from 73.6% in 2002 to 82.3% in 2012, with death-certificate-only (DCO) proportions stable at around 0.1% and unknown stage recorded in 9.6% of male and 7.5% of female solid tumours. Timeliness was considered acceptable, with reporting >99% complete within a turn-around time of 15 months. CONCLUSION: While timely reporting of national data reflects the advantages of a mandatory data collection system, a low DCO% and observed age-specific declines suggest possible underreporting of incidence and mortality data, particularly at older ages. Overall, the evaluation indicates that the data are reasonably comparable and thus may be used to describe the magnitude of the cancer burden in Ukraine. Given its central role in monitoring and evaluation of cancer control activities, ensuring the sustainability of NCRU operations throughout the process of healthcare system reform is of utmost importance.
Authors: Krystle M Leung; Galyna Shabat; Pamela Lu; Adam C Fields; Andrey Lukashenko; Jennifer S Davids; Nelya Melnitchouk Journal: J Glob Oncol Date: 2019-08