Projects per year
Abstract
Objectives: To build a data set capturing the whole breast cancer screening journey from individual breast cancer screening records to outcomes and assess data quality.
Methods: Routine screening records (invitation, attendance, test results) from all 79 English NHS breast screening centres between January 1, 1988 and March 31, 2018 were linked to cancer registry (cancer characteristics and treatment) and national mortality data. Data quality was assessed using comparability, validity, timeliness, and completeness.
Results: Screening records were extracted from 76/79 English breast screening centres, 3/79 were not possible due to software issues. Data linkage was successful from 1997 after introduction of a universal identifier for women (NHS number). Prior to 1997 outcome data are incomplete due to linkage issues, reducing validity. Between January 1, 1997 and March 31, 2018, a total of 11 262 730 women were offered screening of whom 9 371 973 attended at least one appointment, with 139 million person-years of follow-up (a median of 12.4 person years for each woman included) with 73 810 breast cancer deaths and 1 111 139 any-cause deaths. Comparability to reference data sets and internal validity were demonstrated. Data completeness was high for core screening variables (>99%) and main cancer outcomes (>95%).
Conclusions: The ATHENA-M project has created a large high-quality and representative data set of individual women’s screening trajectories and outcomes in England from 1997 to 2018, data before 1997 are lower quality.
Advances in knowledge: This is the most complete data set of English breast screening records and outcomes constructed to date, which can be used to evaluate and optimize screening.
Methods: Routine screening records (invitation, attendance, test results) from all 79 English NHS breast screening centres between January 1, 1988 and March 31, 2018 were linked to cancer registry (cancer characteristics and treatment) and national mortality data. Data quality was assessed using comparability, validity, timeliness, and completeness.
Results: Screening records were extracted from 76/79 English breast screening centres, 3/79 were not possible due to software issues. Data linkage was successful from 1997 after introduction of a universal identifier for women (NHS number). Prior to 1997 outcome data are incomplete due to linkage issues, reducing validity. Between January 1, 1997 and March 31, 2018, a total of 11 262 730 women were offered screening of whom 9 371 973 attended at least one appointment, with 139 million person-years of follow-up (a median of 12.4 person years for each woman included) with 73 810 breast cancer deaths and 1 111 139 any-cause deaths. Comparability to reference data sets and internal validity were demonstrated. Data completeness was high for core screening variables (>99%) and main cancer outcomes (>95%).
Conclusions: The ATHENA-M project has created a large high-quality and representative data set of individual women’s screening trajectories and outcomes in England from 1997 to 2018, data before 1997 are lower quality.
Advances in knowledge: This is the most complete data set of English breast screening records and outcomes constructed to date, which can be used to evaluate and optimize screening.
| Original language | English |
|---|---|
| Pages (from-to) | 98–112 |
| Number of pages | 15 |
| Journal | British Journal of Radiology |
| Volume | 97 |
| Issue number | 1153 |
| Early online date | 12 Dec 2023 |
| DOIs | |
| Publication status | Published - Jan 2024 |
Bibliographical note
Funding:This report is independent research arising from an NIHR Career Development Fellowship for S.T.P. (the POSTBOx study, CDF-2016-09-018) and the ATHENA-M project (NIHR130107), funded from the NIHR’s Health and Social Care Delivery (HS&DR) Research Programme. The study sponsor is the University of Warwick. In addition, S.T.P. was funded by an NIHR Research Professorship (NIHR302434), K.F. was funded by the NIHR through a Development and Skills Enhancement Fellowship and this research was supported by the NIHR Cambridge Biomedical Research Centre (BRC-1215-20014). The views expressed in this publication are those of the author(s) and not necessarily those of the NHS, the National Institute for Health and Research, or the Department of Health. The funder has no role in study design; collection, management, analysis, and interpretation of data; writing of the report; and the decision to submit the report for publication.
Keywords
- breast neoplasm
- mammography
- data accuracy
- routinely collected health data