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New study suggests registry gaps in follow-up information for certain cancers

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Standards 5.3 and 5.4 of the American College of Surgeons’ (ACoS) Cancer Program Standards 2012, Version 1.2.1: Ensuring Patient-Centered Care require cancer registries to perform follow-up for 80%–90% of analytic cases. This includes recording vital status, cancer status, and date of last contact.

Although cancer registry follow-up guidelines exist, these guidelines are not tailored to individual risks and are mostly based on limited evidence. In addition, the guidelines have remained mostly unchanged in the last 15 years and are typically based on older studies. Likewise, recurrence information is not systematically recorded in all registries, and there is lack of mandate for collecting complete recurrence information.

The Commission on Cancer (Coc) recently designed a new study regarding post-active treatment surveillance that may inspire new guidelines on follow up activities. Participation in this special study is required by all CoC-accredited sites to fulfill Standard 5.7 (with the exception of Veterans Affairs, Department of Defense, and pediatric facilities). Data collection for the special study was launched on April 1, 2015, and it will end on July 15, 2015.

The purpose of this study is to analyze data from the National Cancer Data Base (NCDB) to assess optimal post-treatment surveillance after breast, colorectal, and lung cancers diagnoses. In addition, the CoC is looking for ways to improve the collection of critical variables (e.g., recurrence and comorbidity). These variables will make the NCDB more valuable because it will allow researchers to answer questions pertaining to outcomes for patients diagnosed with cancer.

The study requires the analysis of active treatments as well as detection of new primary cancer and/or locoregional and distant recurrence for selected cases. The study involves patients who were diagnosed with breast, colorectal, or lung cancer between January 1, 2006 and December 31, 2007. Registries are asked to provide additional clinical information such as imaging study data, biopsy data, and recurrence data for five years following the patient’s surgery.

Significance of the study
So why is the post-surveillance study important, and what can cancer registrars glean from it?

Based on preliminary feedback that I’ve received, registrars have discovered that the clinical information required for analysis is not available in the cancer registry database. Many are also discovering that the information is limited to the date of last contact and cancer status. In some cases, the annual surveillance on imaging and/or tumor markers is incomplete or not recorded at all. Although patients generally receive annual follow-up, the pertinent information regarding outcomes is also lacking in the registry database. There is also no clear documentation pertaining to the frequency and intensity of surveillance.

To find the required information, registrars must manually reference each facility’s medical records, including electronic and/or paper records, dating back to 2006 and 2007. This includes referencing the initial encounter as well as each subsequent encounter for five years following the initial encounter. Hard copy medical records that had been purged or that were in storage pose additional challenges. Patients often receive follow-up care outside of the institution in which their cancer was diagnosed or treated initially, requiring registrars to seek information outside of the institution as well.

Improving follow-up data collection
Do registrars need to improve the way in which they collect data during the follow-up process?

The answer is “yes.” Moving forward, registrars must find ways to improve collection of critical information pertaining to outcomes for patients diagnosed with cancer. The process will help determine optimal follow-up strategies for patients in terms of the following:

  • Detection of locoregional recurrence
  • Detection of distant metastases
  • Monitoring of treatment toxicities
  • Close monitoring of routine surveillance imaging vs. symptom driven imaging
  • Evidence of surveillance frequency and intensity
  • Close monitoring of pertinent tumor markers
  • Outcomes and survival
  • Secondary endpoints
  • Assure continuation of primary care/other health care

In conclusion, we must find ways to improve data collection. What are you doing to support this effort?

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