Wilhelmina Ross PA MPH CTR Westat Jeannette JacksonThompson MSPH PHD n Missouri Cancer Registry and Research Center Diane Ng MPH Westat Maricarmen TraversoOrtiz MPH CTR ID: 780501
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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
June 2019
Slide2Background
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
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Slide3BackgroundGuidelines-based treatment consists of:Extensive debulking surgery; also called cytoreductionSpecific surgical staging techniques done during surgery
Chemotherapy with a typical regimen a combination cisplatin and paclitaxelNCCN guidelines specifically recommend that ovarian cancer surgery be performed by
GOs3
Slide4BackgroundThere 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
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Slide5Purpose and ObjectiveThis 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; I
dentify 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.5
Slide6MethodsRecruitmentThree Midwest central cancer registries (CCRs)
participated in the studyIowa (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.6
Slide7Selection Criteria7
Inclusion
Exclusion
Primary Site: Ovary, C56.9; Fallopian Tube, C57.0; and Primary Peritoneal, C48.1-C48.8
Tumors of low malignant potential (ICD-O codes 8442, 8451, 8462, 8472, and 8473)
Behavior: 3 (Malignant)
Type of Reporting Source: Autopsy only and death certificate only
Histology: 8000-8576 and 8930 – 9110
Synchronous tumors
Year of Diagnosis*: 2011 and 2012
No records available to CCR
Age at Diagnosis:
>
18 and < 90
Resident of state other than where CCR located
Ovarian cancer must be the first primary cancer
Slide8Study SampleRandom selection SAS Program was created by CDC and applied to an extraction of each
participating registry's database to create samples for the studydrew a random sample of 450 cases defined
inclusion and exclusion criteriacreated a file that could be imported into Abstract Pluscreated SAS datasets of the eligible population and a random sample for CDC to review8
Slide9TrainingWebinar 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 ProtocolData dictionary
Abstract Plus study specific software with v16 metafile that was modified with study-specific editsFAQs (living document)9
Slide10Data CollectionOccurred between October 2017 and July 2018Abstract Plus data collection tool
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Slide11Data Collection11
Slide12Results12
Slide13Results13
Slide14Results14
Slide15Results15
Slide16Results16
Slide17Results17
Slide18ChallengesRecruitment issues timing
funding mechanismsindividual 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.
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Slide19ConclusionThis 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. 19
Slide20ConclusionEffectiveness 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 area and 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.
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Slide21ConclusionUncovered 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.
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Slide22FundingThis 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
.
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Slide23AcknowledgementsWe’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,
Sarma Garimella, 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)23
Slide24Thank 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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