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Methodology of Conducting the Patterns of Ovarian Cancer Care and Survival in the Midwestern Region of the United States.

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  1. Methodology of Conducting the Patterns of Ovarian Cancer Care and Survival in the Midwestern Region of the United States Wilhelmina Ross, PA, MPH, CTR - WestatJeannette Jackson-Thompson, MSPH, PHD n- Missouri Cancer Registry and Research Center Diane Ng, MPH, Westat Maricarmen Traverso-Ortiz, MPH, CTR - Westat

  2. Background • Involvement of a gynecologic oncologist (GO) in the care of ovarian cancer patients leads to improved outcomes, perhaps related to greater adherence by GOs to guidelines-based procedures. • Standard treatment adherence, mortality and survival outcomes are significantly and consistently greater when GOs are involved in treatment. • Being seen by a GO is the most significant predictor of whether a woman with ovarian cancer will receive standard treatment

  3. Background • Guidelines-based treatment consists of: • Extensive debulking surgery; also called cytoreduction • Specific surgical staging techniques done during surgery • Chemotherapy with a typical regimen a combination cisplatin and paclitaxel • NCCN guidelines specifically recommend that ovarian cancer surgery be performed by GOs

  4. Background • There is an uneven distribution of GOs in the United States. • GOs are more likely to be in urban cities. • Region with fewer practicing GOs includes: • Iowa, Kansas, Minnesota, • Missouri, North Dakota, • Nebraska, and South Dakota

  5. Purpose and Objective • This project pursued investigation of ovarian cancer treatment and survival in the Midwest region where the availability of GOs may be low when compared to other regions of the US. •  The purpose of the study was to: • Assess patterns of ovarian cancer care, treatment and survival; • Identify factors associated with receipt of non-guidelines-based treatment. • This presentation aims describe and analyze the methodology used throughout the study regarding study design and execution.

  6. Methods • Recruitment • Three Midwest central cancer registries (CCRs) participated in the study • Iowa (SEER) • Kansas (NPCR) • Missouri (NPCR) • Subcontract with Westat • Data collected included existing information from each registry’s database as well as additional study-specific data items obtained from reporting facility medical records. • CCR staff followed a protocol developed by CDC and Westat.

  7. Selection Criteria

  8. Study Sample • Random selection SAS Program was created by CDC and applied to an extraction of each participating registry's database to create samples for the study • drew a random sample of 450 cases • defined inclusion and exclusion criteria • created a file that could be imported into Abstract Plus • created SAS datasets of the eligible population and a random sample for CDC to review

  9. Training • Webinar on study orientation and training given to each participating registry. • CDC, Westat, and registries participated in training. • Abstract Plus demonstration given for data collection tutorial. • Participating registries received: • Study Protocol • Data dictionary • Abstract Plus study specific software with v16 metafile that was modified with study-specific edits • FAQs (living document)

  10. Data Collection • Occurred between October 2017 and July 2018 • Abstract Plus data collection tool

  11. Data Collection

  12. Results

  13. Results

  14. Results

  15. Results

  16. Results

  17. Results

  18. Challenges • Recruitment issues • timing • funding mechanisms • individual state IRB review processes • Customization of collection tool Delayed delivery of Abstract Plus • Reasons for difficulty with abstracting data related to chemotherapy • Records had been archived and were difficult to retrieve. • Physician offices where patients were seen had since closed. • Some facilities had upgraded EHR systems and the records that were from the old EHR system could not be accessed without upper management approval.

  19. Conclusion • This study’s design, approach, and implementation was suitable overall for describing specific ovarian cancer treatment and survival in the Midwest. • The sample drawn is representative of the population in these states. • The data collection tool yielded high quality data for most items. A very rich data source to evaluate treatment adherence and outcomes now exists and can be used extensively to develop public health interventions to improve ovarian cancer burden.

  20. Conclusion • Effectiveness of the data collection instrument • The instrument performed well across many of the elements. • We also learned important improvements that we can make in future similar data collection activities. • Findings • Provided critical lessons learned that can be applied to future data collection in this areaand with regard to surgery, GO involvement and level of involvement, and second and third line chemotherapy can be collected from the medical records by cancer registries.

  21. Conclusion • Uncovered key issues with data collection, including incomplete or inadequate information. • These data will allow the CDC to help identify groups of women who are not receiving the benefit of optimal surgery and GO care and provide critical data for improvements we can make in the lives of cancer patients moving forward.

  22. Funding • This project was conducted by CDC, Westat and the state cancer registries of Iowa, Kansas, and Missouri, and funded under CDC contract 200-2014-61258. The Iowa Cancer Registry is also funded in part with Federal funds from NIH/NCI contract HHSN261201800012I and cancer center support grant NIH/NCI P30CA086862. The Kansas Cancer Registry is also funded by the Kansas Department of Health and Environment. The Missouri Cancer Registry core activities are supported in part by a cooperative agreement between the Centers for Disease Control and Prevention (CDC) and the Missouri Department of Health and Senior Services (DHSS) (U58DP006299-01/02) and a Surveillance Contract between DHSS and the University of Missouri.

  23. Acknowledgements • We’d like to acknowledge the work of the Ovarian Cancer Treatment Study Group: Lisa L. Hunter, Charles F. Lynch, Michele M. West (Iowa Cancer Registry); Sue-Min Lai, SarmaGarimella, John Keighley, Li Huang (Kansas Cancer Registry); Jeannette Jackson-Thompson, Nancy Hunt Rold, Chester L. Schmaltz, Saba Yemane (Missouri Cancer Registry); Wilhelmina Ross, Diane Ng, Maricarmen Traverso-Ortiz (Westat); Jennifer M. Wike (CDC contractor); Trevor D. Thompson, Sun Hee Rim, Angela Moore, Sherri L. Stewart (CDC)

  24. Thank You Stay tuned for additional papers and presentations regarding the study. Please contact the following for more information: Wilhelmina Ross, PA, MPH, CTR - WilhelminaRoss@Westat.com Jeannette Thompson-Jackson - jacksonthompsonj@health.missouri.edu Diane Ng, MPH - DianeNg@Westat.com Maricarmen Traverso-Ortiz, MPH, CTR - MaricarmenTraversoOrtiz@Westat.com

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