Medical Chart Review for Screening History among Women with Invasive Cervical Cancer in - PowerPoint Presentation

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Medical Chart Review for Screening History among Women with Invasive Cervical Cancer in Three States: CICC Study, 2013-2016

April Greek, PhDBattelle

J. Elizabeth Jackson Battelle, Seattle, WA, United StatesMei-Chin Hsieh Louisiana Tumor Registry, New Orleans, LA, United StatesGeorgetta Alverson Michigan Cancer Surveillance Program, United StatesAmanda Crosbie Cancer Epidemiology Services, New Jersey Department of Health, NJ, United StatesAntoinette Stroup New Jersey State Cancer Registry,Trenton, NJ, United StatesVicki Benard Centers for Disease Control and Prevention, Atlanta, GA, United States

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Disclosures

No financial relationships or conflict of interest to disclose.

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Background

Each year approximately 12,000 women in the U.S. are diagnosed with cervical cancer and more than 4,000 women die from the disease

1. Previous studies examining screening history in women diagnosed with cervical cancer are over a decade old and were not conducted in the general U.S. population (e.g., managed care setting among those consistently insured) 2,3. 3

1 U.S. Cancer Statistics Working Group. U.S. Cancer Statistics Data Visualizations Tool, based on November 2017 submission data (1999-2015): U.S. Department of Health and Human Services, Centers for Disease Control and Prevention and National Cancer Institute; June 2018 [Available from: www.cdc.ov/cancer/DataViz ]

2 Sung HY, Kearney KA, Miller M, Kinney W, Sawaya GF, Hiatt RA. Papanicolaou smear history and diagnosis of invasive cervical carcinoma among members of a large prepaid health plan. Cancer. 2000;88(10):2283-9.

3 Leyden WA, Manos MM, Geiger AM,

Weinmann

S,

Mouchawar

J, Bischoff K, et al. Cervical cancer in women with comprehensive health care access: attributable factors in the screening process. Journal of the National Cancer Institute. 2005;97(9):675-83.

The Case Investigation of Cervical Cancer (CICC) Study

is a population-based study of women diagnosed with cervical cancer (CDC).The study examines:Cervical cancer screening history and follow-up of abnormal test results in the

5 years prior to diagnosis in different health care settings through medical chart reviews Participants’ self-reported screening history; and, barriers and facilitators to screening and follow up care prior to diagnosis4

Overview

Study Participant Eligibility

Three cancer registries chosen for the study:

Louisiana Tumor Registry Michigan Cancer Surveillance ProgramNew Jersey State Cancer RegistrySampling, Population-Based: All women diagnosed with invasive cervical cancer from 2013-2016 in Louisiana, and from 2014-2016 in Michigan and New Jersey were potential participantsExcludingAge 20 or younger at diagnosis

Known deceased

All data collection was conducted by the registries.

Study packet was mailed to eligible participants including a survey, consent form for medical chart abstraction, and health care source form.

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DATA

Cancer Registry Databases

Vital statusDate of diagnosis, histology, primary site, behavior, and summary stage of tumor Characteristics at the time of diagnosis including age, race, Hispanic ethnicity, metropolitan residence, poverty indicator and insuranceThese data were used to identify the sampling frame, to describe the full population sample, and to evaluate response bias.Survey (English & Spanish)

Cervical cancer screening; barriers and facilitators

Survey data provide the woman’s perspective on screening and care.

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DATA: Medical Chart Review (1)

Different from the Patterns of Care studies

where medical records are obtained after diagnosis from oncologists and treatment facilitiesCICC Study reviewsscreening and treatment before the cancer diagnosis

Obtains medical records from all relevant providers

(including primary and specialty care)

in the 5 years prior to and including the date of diagnosis.

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DATA: Medical Chart Review (2)

How are medical records identified?Reporting physician in registry databaseHealth Care Source Form completed by participant

Snowball identification of additional providers from medical recordsLouisiana also had access to central electronic medical record repository8

DATA: Medical Chart Review (3)

Training to ensure consistency across sitesDifferent:

Screening and treatment before cancer diagnosis Detailed documentation: standard abstraction form, study procedures, study terms, and annotated examples Group training sessions prior to data collectionElicited comment and feedback from registries on materialsSecondary chart abstraction during data collection with review and discussion by a gynecologic oncologistOngoing Q&A Log

to share issues and solutions uncovered during collection

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DATA: Medical Chart Review (4)

Structured Medical Record Abstraction Form Online and paper-version Data Collected:

Clinical history5-year review period prior to and including the date of diagnosisCervical cancer screening Colposcopies and cervical biopsiesOther diagnostic or treatment procedures

Symptoms, date first reported

Chart data provide detailed information on screenings, treatment of abnormal results, and diagnosis.

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Response Status

* Other ineligibility includes participating in another recent study, unable to locate mailing address, missing information, diagnosis determined to be ineligible, language barrier, or physician refusal.

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Total in sampling frame

2748

Out of Scope

Deceased (28%)

755

Other*

263

Study participation

Enrolled

481

Refused: Active or passive

1249

Response Rate, survey

28%

Chart abstraction participation

Enrolled

400

Refused: Active or passive

1330

Response Rate

23%

Comparison of Enrolled versus Refused

Women who enrolled in the study were similar to those who

refused to participate by year of diagnosis ageethnicity poverty indicatorinsurancehistologystage at diagnosis

There were slight differences by race and residence in a metropolitan area at diagnosis

Pearson chi-square. * p < 0.05; *** p < 0.001

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Percent distributions of those who participated in the study with surveys only were similar to those who also consented to chart abstraction.

Age at Diagnosis, 47.7 years mean

(SD 13.1; range 23-90)

Medical Chart Review, Facility Outreach

Total

# facilities records were requested or accessed from

572

# Hospital facilities

121

# Non-hospital facilities

451

# Women’s records requested from each facility;

mean (range)

1.7 (1-16)

Medical chart abstraction of screening and follow-up care in the 5 years prior to cancer diagnosis at a population-level is

resource intensive.

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Results: Pap/HPV Screening

Obtained the chart data for 376 of 400 consented women

Screening test was defined as having a Pap/HPV test conducted > 6 months before the date of diagnosis.40% of women were screened in the 5 years prior to diagnosis.

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Question #2: Screening by Demographics

Overall, 40% were screened

% Screened

p-value

‡

Age at Diagnosis:

21-34 years

61

0.000

35-49 years

43

50-64 years

29

65-79 years

27

80+ years

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Race/Ethnicity:

Non-Hispanic White

43

0.020

Non-Hispanic Black

31

Non-Hispanic Other

43

Hispanic

22

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No significant difference by metropolitan residence or census tract poverty indicator.

‡Fisher’s exact test

Screening status by Staging

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Challenges and Lessons Learned

Challenges accessing/obtaining medical records, include:

Incomplete or no information on the Health Care Source Form; contact information was wrong for providers who had moved; identification of the incorrect facility for records requests when providers practiced at more than one location; for non-hospital facilities, highly variable request processes and response times from staff; and records sent that did not match the time frame, type of care, or chart elements requested.

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Challenges and Lessons Learned (2)

Some challenges experienced by the registries might have been compounded by providers being more accustomed to requests from registries for cancer care than preventive care.

One registry reported that an advance letter mailed to providers explaining the goals of the study was helpful in getting appropriate responses. Oncologists often retain patient’s records of gynecologic history gathered from other providers. Patient consent was provided through date of diagnosis. Consider including the time period immediately following diagnosis to obtain data from oncologists.

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Challenges and Lessons Learned (3)

The low participation rate that we found with the CICC Study is similar to participation rates observed in other studies of cervical cancer survivors (13% - 39%).

Previous studies have documented several reasons for non-participation including being too busy (younger than other cancer survivor groups),having ongoing illness,feeling it was too difficult to discuss their cancer,stigma of having a cancer that is associated with a sexually transmitted disease (HPV).Social networks like Cervivor

: “No more fear. No more shame. No more confusion. No more whispering. No more suffering. No more women dying. CERVIVOR IS HERE! We understand….”

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Next steps

Comparing alternative definitions of screening

Use chart abstraction data to examine failure in follow up and failure in detectionUse survey data to understand facilitators and barriers to timely follow up of abnormal test results.CDC will use the results of this study to design interventions to increase appropriate screening.

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Acknowledgements

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Study Team

Battelle:

April Greek, J. Elizabeth Jackson

CDC:

Vicki Benard

, Virginia Senkomago, Cheryll Thomas

Louisiana Tumor Registry:

Mei-Chin Hsieh

, Xiao-Cheng Wu, Mary O'Flarity, Christina Lefante, Molly Ariail, Lauren Maniscalco

Michigan Cancer Surveillance Program:

Georgetta Alverson

, Glenn Copeland (retired), Amy Marquardt

New Jersey State Cancer Registry & New Jersey Department of Health:

Amanda Crosbie

,

Antoinette Stroup

, Adrian Botchway, Cynthia Nunez, Natalia Herman, Lisa Paddock, Karen Pawlish

University of Alabama, Birmingham:

Warner Huh

Funding: Contract CDC; Registries also supported by NPCR & SEER.

We thank the cervical cancer survivors and physician offices who contributed to the project in Louisiana, Michigan and New Jersey.