The completeness and timeliness of cancer registration and the implications for measuring cancer burden

Conan Donnelly, Victoria Cairnduff, Jingwen Jessica Chen, Therese Kearney, Deirdre Fitzpatrick, Colin Fox, Anna Gavin

Research output: Contribution to journalArticlepeer-review

2 Citations (Scopus)

Abstract

BACKGROUND: Population based cancer registration provides a critical role in disease surveillance in terms of incidence, survival, cancer cluster investigations and prevalence trends, and therefore high levels of completeness and timeliness are required. This study estimates completeness and variation between early and late registrations in the N. Ireland Cancer Registry (NICR) and assesses the implications for reporting cancer incidence and for registry-based research.

METHODS: Two main approaches assessed completeness. For the period 2010-2012, incidence reported in the first year of data publication was compared to incidence reported in subsequent years until 2015. Demographic characteristics and survival of incident cases ascertained before the first publication year were compared to those ascertained in subsequent years. The flow method approach was used to estimate completeness annually after the incident year.

RESULTS: Overall incidence for all cancers increased between the first year of data publication and subsequent years up to 2015, irrespective of year of diagnosis. Late registrations had poorer survival. The flow method approach estimated the completeness of case ascertainment of NICR data to be 96% complete at five years for all cancers combined.

CONCLUSION: The estimated completeness levels for the NICR are comparable to other high quality cancer registries internationally. While data timeliness has little impact on incidence estimates, delays in registration may have implications for specific research studies into incidence and survival. This means that improvements in the timeliness of reporting should be a target for all registries but not at the expense of completeness.

Original languageEnglish
Pages (from-to)101-107
JournalCancer epidemiology
Volume49
Early online date07 Jun 2017
DOIs
Publication statusPublished - 01 Aug 2017

Keywords

  • Aged
  • Aged, 80 and over
  • Electronic Health Records
  • Female
  • Humans
  • Incidence
  • Male
  • Middle Aged
  • Neoplasms/epidemiology
  • Northern Ireland/epidemiology
  • Prevalence
  • Registries
  • Time Factors
  • Tumor Burden

Fingerprint Dive into the research topics of 'The completeness and timeliness of cancer registration and the implications for measuring cancer burden'. Together they form a unique fingerprint.

Cite this