Summer 2022 NAACCR Narrative Leave a comment


Recinda Sherman, MPH, PhD, CTR
NAACCR Program Manager of Data Use and Research
rsherman@naaccr.org

 

 

Factors Impacting 2020 Case Completeness: Survey Results

One of the strengths of central cancer registry data is its representativeness with essentially 100% coverage of the US and Canada. However, high levels of case ascertainment are necessary to generate accurate estimates of cancer burden and support public health research.

But what happens when the whole world is turned topsy-turvy by a global pandemic—creating issues with staffing, operations, and behaviors within cancer registries, hospitals and other reporting facilities? Our cancer surveillance community is invested in high quality data, and many registries have undergone herculean efforts to capture and process 2020 cases. But many are still struggling to handle 2020 cases, and some are still waiting for facilities to report those cases. This makes it difficult to distinguish between true drops in cancer diagnoses and spurious drops due to issues with case ascertainment.

In follow-up to presentations at the Summer Forum by the National Program of Cancer Registries (NPCR) and Surveillance Epidemiology and End Results Program (SEER) regarding 2020 case completeness, NAACCR distributed the Factors Impacting 2020 Completeness Survey in late June. The goal of the survey was to assess the magnitude of each of these factors, and the impact on case counts and case ascertainment.

 

Survey Results

Of 13 Canadian registries, 31% completed the survey, and of 57 US registries, 68% completed the survey.

 

To assess the impact of staff shortages, we asked to what extent did registry staff shortages, due to COVID-19 deployments or other reasons, impact case-finding efforts (Figure 1). The majority, 53%, reported no impact on case reporting from facilities due to staff shortages. Two registries reported they were unable to complete case-finding audits due to pandemic-related travel restrictions. Of registries that reported no impact on case-finding due to COVID-related registry staffing issues and were able to estimate completeness for 2020, the range in completeness was 77%-99%, with a mean estimated completeness of 88% at time of survey. Of registries that reported an impact on case-finding due to COVID-related staffing issues and were able to estimate completeness for 2020, the range in completeness was 72%-93%, with a mean estimated completeness of 83% at the time of survey.

 

 

 

 

We also asked to what extent reporting facility staffing or other resource issues impacted case-finding (Figure 2). The majority, 70%, reported at least some impact at hospital facilities, and 53% at physician offices. But 14% of the registries did not know if their hospitals were impacted, and 30% did not know if their physician offices were impacted. Of registries that reported no impact on case-finding due to registry COVID-related hospital constraints and were able to estimate completeness for 2020, the range in completeness was 77%-99%, with a mean estimated completeness of 88% at time of survey. Of registries that reported an impact on case-finding due to COVID-related hospital constraints and were able to estimate completeness for 2020, the range in completeness was 72%-99%; with a mean completeness of 85% at the time of survey.

 

 

 

To assess potential drop in cancer diagnoses, we asked to what extent did registries show changes in the number of pathology reports (Figure 3). Over half, 52%, reported a decrease in numbers of pathology reports and 23% were unable to determine any change. Of those registries reporting a decrease in pathology cases, 30% are continuing to see a decrease in pathology reports for diagnosis year 2021; however, 43% of the registries were unable to assess the volume of 2021 pathology reports. Of registries reporting no change in pathology report counts and were able to estimate completeness for 2020, the range in completeness was 72%-99%; with a mean estimated completeness of 86% at the time of survey. Of registries reporting a decrease in pathology report counts and were able to estimate completeness for 2020, the range in completeness was 80%-90%; with a mean estimated completeness of 88% at the time of survey.

 

 

It is important to note that 35% of the respondents were unable to evaluate their current case completeness, and 32% of US and 69% of Canadian registries did not respond to the survey. These registries may have experienced different pandemic impacts on their 2020 case completeness.

In such an unusual situation like this, how can and how should we calculate and use completeness estimates? How do we distinguish between low case ascertainment and meaningful changes in cancer care, access, and outcomes? How do we provide accolades to registries that are commensurate with their actual efforts? We are actively assessing the data. Our goal is to quantitatively assess the true decrease in case counts due to pandemic-related changes in medical care and use, and to minimize the impact of decreased case ascertainment due to disruptions in registry operations.

We would like to extend our thanks to registries who participated in this survey, and who offered explanatory comments and suggestions for assessing 2020 case completeness. Moving forward, based on the results of this survey and other input, NAACCR is collaborating with NPCR and SEER to determine if there will be any changes in this year’s Call for Data or Certification. We will reach out to registries for additional input as we work through these extraordinary circumstances.

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As always, if you have any questions, concerns, or revolutionary ideas in the NAACCR Research and Data Use area, please contact me rsherman@naaccr.org.

 

 

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