Development of a tool for comprehensive evaluation of population-based cancer registries

Abstract

Objective: Several methods have been suggested for evaluation of population-based cancer registries (PBCR) worldwide. However, most of these methods evaluate the data and outputs of the cancer registries. This study aimed to develop a comprehensive tool and protocol for evaluation of inputs, processes and outputs of a PBCR.

Methods: The standards of the North American Association of Central Cancer Registries (NAACCR) were used to draft a comprehensive checklist. In addition, the national guidelines of PBCR were used to develop a questionnaire for evaluation of knowledge and practice of the PBCR personnel. Furthermore, a protocol for evaluation of the completeness and validity of the PBCR data was developed according to the International Agency for Research on Cancer (IARC) and the NAACCR guidelines. A 0-4 Likert based score and expert opinions (10 experts) were used to assess validity of the eight questionnaires/checklists. A modified Delphi method was applied to validate the checklists and questionnaires. Questions with a score higher than 3 remained in the final tools.

Results: The final package consists of 546 questions including 108 (19.8%) for evaluation of guidelines, 54 (9.9%) for analysis and reports, 87 (15.9%) for governance and infrastructure, 155 (28.4%) for information technology, 21 (3.8%) for personnel knowledge and 121 (22.2%) for their practice. Additionally, data quality indicators were also considered for evaluation of PBCRs.

Conclusion: This comprehensive tool can be used to show the gaps and limitations of the PBCR programs and provide informative clues for their improvement.

Keywords: Assessment; Cancer registry; Disease registry; Evaluation; Population based cancer registry.