Complete Central Registry Treatment Information Requires Ongoing Reporting and Consolidation Well Beyond 6-Month Reporting

Complete Central Registry Treatment Information Requires Ongoing Reporting and Consolidation Well Beyond 6-Month Reporting Eric B. Durbin, DrPH, MS, Director of Cancer Informatics Frances E. Ross, CTR, Director of Registry Operations Kentucky Cancer Registry June 21, 2017 North American Association of Central Cancer Registries Annual Conference Albuquerque, NM 1

Overview Treatment and case reporting requirements Possible ways in which reporting requirements may lead to incomplete treatment in central registries SEER rapid response study to examine this question Treatment administration and reporting patterns in Kentucky Recommend best practices for central registry operations to ensure complete treatment capture from hospital facilities

Importance of Complete Treatment Information to Central Cancer Registries Complete treatment information essential to value of central cancer registries Necessary to assess population-based patterns of care Only data source to measure the dissemination of best treatment practices in the community/population Population-based treatment information in combination with molecular markers important to advances in precision medicine Capturing complete treatment information remains a huge challenge for central registries

Central and Hospital Registry Reporting Requirements SEER requires at least 95% complete case reporting for 12-month data submissions NPCR requires at least 90% complete case reporting for 12-month data submissions Commission on Cancer (CoC) hospitals must abstract and transmit cases to state registries within 6 months of diagnosis Kentucky Cancer Registry (KCR) requires reporting within 6 months of diagnosis or within 6 months of date first seen (if not treating facility)

Could Reporting Rules Impair Complete Treatment Capture? Is it possible that 6-month reporting requirements and reporting practices could result in incomplete treatment capture at central cancer registries? What if first course treatment extends beyond 6 months? What if hospital registries fail to re-transmit updated treatment information that is abstracted following the 6-month report? What if central registries do not consolidate new treatment information received after an initial hospital report?

Study Purpose SEER Rapid Response Study sponsored in 2015 Measure and evaluate delays in cancer treatment - Administration of treatment - Capture and reporting of treatment to the Kentucky Cancer Registry (KCR) Specific Aims - Quantify changes in treatment data from time first reported through at least 15 months post diagnosis - Evaluate whether central registry practices should continue to consolidate treatment following first reports

Methods Examined treatment information for invasive adult cancer cases diagnosed in 2014 and reported to the KCR Utilized monthly archival copies of the KCR central registry database to perform the analyses Analyzed data for CoC and non-coc facilities for lung, breast, prostate, colorectal and all sites combined 10% random sample case audit was performed to validate processing of treatment information from archival data sources

KCR s Cancer Patient Data Management System () State mandate requires all non-federal hospitals utilize KCR s Cancer Patient Data Management System () for abstracting and reporting is a web-based hospital cancer registry data management application developed and maintain by KCR automatically reports initial treatment information with case meets COC or non-coc completeness requirements Any subsequent treatment information abstracted by Kentucky hospitals is automatically reported and consolidated into the Kentucky central registry Archived monthly copies of the central registry reflect status of treatment for all patients over time

Archival Databases Examined (15-26 months of follow-up) Month Jan-14 Archives < 15 Jan-14 Mar-15 Apr-15 26 Feb-14 May-15 25 Mar-14 Jun-15 24 Apr-14 Jul-15 23 May-14 Aug-15 22 Jun-14 Sept-15 21 Jul-14 Oct-15 20 Aug-14 Nov-15 19 Sep-14 Dec-15 18 Oct-14 Jan-16 17 Nov-14 Feb-16 16 Dec-14 Dec-14 Feb-16 Mar-16 15 Total Follow-up

Study Data Capture For each eligible case in study - Examined first course treatment information consolidated in central registry across each archival copy of the central registry database Measures - Calculated months from diagnosis to date of treatment being administered - Calculated months from diagnosis to treatment being reported (treatment report existing in central registry) - By modality (surgery, chemo, radiation, hormone, immunotherapy, other, all modalities combined) - By facility type (CoC, non-coc, all combined) Summarized by 95% and 100% case complete treatment and treatment reporting Sites presented include lung, breast, prostate, colorectal, and all sites combined

Results for Lung Cancer Treatment in Kentucky 2014 Lung Cancer Treatment Modality Facility type Month When 95% Cases Treatment Administered Month When 100% Cases Treatment Administered Month When 95% Cases Treatment Reported Month When 100% Cases Treatment Reported Surgery All 4 18 14 26 939 COC 4 18 10 26 868 non-coc 3 8 19 25 71 N Chemo All 4 19 16 26 2034 COC 4 19 14 26 1850 non-coc 3 9 20 26 184 Radiation All 6 16 16 26 1900 COC 6 16 15 26 1748 non-coc 6 8 20 24 152 Hormone All 3 3 12 12 8 COC 3 3 12 12 8 non-coc Immunotherapy All 3 16 17 21 88 COC 3 16 17 20 82 non-coc 3 3 21 21 6 Other All 2 2 19 19 9 COC 2 2 19 19 8 non-coc 0 0 13 13 1

Lung Cancer Treatment and Reporting (All Treatment Modalities)

2014 Breast Cancer Treatment and Reporting (All Treatment Modalities)

2014 Breast Cancer Treatment and Reporting (By Modality)

2014 Prostate Cancer Treatment and Reporting (All Treatment Modalities)

2014 Colorectal Cancer Treatment and Reporting

2014 All Sites Cancer Treatment and Reporting

Summary: Treatment and Reporting Delays

If Additional Treatment Information Not Consolidated into Central Registry Following First Report from Facilities

Conclusions First course treatment administration continues well beyond the 6-month standard for hospital reporting of cases to central registries - 95% of know treatment administered between 5 and 10 months - 5% of treatment is administered through 19 months! Treatment reporting to central registries extends well beyond the 12-month submission standard - 95% treatment reported within 17 months - 5% of treatment reported through 26 months If hospital registries do not re-transmit or central registries do not consolidate additional treatment information following the first facility abstract, nearly 12% of cases will have some missing treatment information In order to maintain complete treatment information, central registry best practices require continuous reporting and consolidation of treatment from hospital registries

Acknowledgements Frances Ross, CTR Tonya Brandenburg, CTR Isaac Hands, MPH Jenny Gregory, MS Jason Jacob, MS NCI/SEER Rapid Response Study Funding HHSN261201300013

Thank you! Eric B. Durbin, DrPH, MS Director of Cancer Informatics Kentucky Cancer Registry ericd@kcr.uky.edu (859) 218-3182