National Breast and Cervical Cancer Early Detection Program (a National Report)

7/30/2019 National Breast and Cervical Cancer Early Detection Program (a National Report)

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N A T I O N A L B R E A S T A N D C E R V I C A L C A N C E R E A R L Y D E T E C T I O N P R O G R A M

detection

early

Summarizing the First 12 Years of Partnerships andProgress Against Breast and Cervical Cancer

1 9 9 1 2 0 0 2 N A T I O N A L R E P O R T

U.S. Department of Health and Human Services


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National Breast and Cervical CancerEarly Detection Program

19912002 National Report

A. Blythe Ryerson, MPH

Vicki B. Benard, PhDEpidemiology and Applied Research Branch

Anne C. Major

Program Services Branch

For additional copies of this report, please contact the

Centers for Disease Control and Prevention,

National Center for Chronic Disease Prevention and Health Promotion

Division of Cancer Prevention and Control

Attn: Publications, Mail Stop K-64

4770 Buford Highway, N.E.

Atlanta GA 30341-3717

An electronic version of this report is available athttp://www.cdc.gov/cancer/nbccedp/Reports/NationalReport/index.htm

All materials in this report are in the public domain and may be reproduced or copiedwithout permission. However, citation of CDC as the source is appreciated.

i 19912002 N A T I O N A L R E P O R T
http://www.cdc.gov/cancer/nbccedp/Reports/NationalReport/index.htmhttp://www.cdc.gov/cancer/nbccedp/Reports/NationalReport/index.htm


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Table of Contents

Acknowledgments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . iv

Foreword . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . v

Executive Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . vi

Overview of the NBCCEDP . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1History of the NBCCEDP . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

Components of the NBCCEDP . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

NBCCEDP Research and Evaluation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

Screening Results and Outcomes in the NBCCEDP . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

Breast Cancer Screening. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .10

Breast Cancer Screening Participation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .10

Breast Cancer Screening Results . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .12

Breast Cancer Screening Diagnostic Follow-Up . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .14

Breast Cancer Detection. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .14

Positive Predictive Value of Abnormal Mammograms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .17

Stage of Invasive Breast Cancer at Time of Diagnosis. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .17

Cervical Cancer Screening . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .18

Cervical Cancer Screening Participation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .19

Cervical Cancer Screening Results. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20

Cervical Precancer and Cancer Detection . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22

Positive Predictive Value of Abnormal Pap Tests . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23

Stage of Invasive Cervical Cancer at Time of Diagnosis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23

Future Directions. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25

Data Tables . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27

Appendix IThe Minimum Data Elements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 67

Appendix IINBCCEDP Publications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 70

Appendix IIIMethods. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73

Breast Cancer Screening Analysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73

Cervical Cancer Screening Analysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .74

References. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .75

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AcknowledgmentsThe Centers for Disease Control and Prevention (CDC) would like to acknowledge the following contributors:

The state, territorial, and American Indian/Alaska Native tribes and tribal organizations that are part of theNational Breast and Cervical Cancer Early Detection Program (NBCCEDP) for their commitment to providinghigh-quality breast and cervical cancer screening, follow-up, and treatment to women in underserved populations throughout the United States.

Program and scientific staff from CDCs Division of Cancer Prevention and Control for their early planningand promotion of this report, including Vicki Benard, PhD; Donald Blackman, PhD; Christie Eheman, PhD;Herschel Lawson, MD; Nancy C. Lee, MD; Janet Royalty, MS; and Sandra F. Thames.

Information Management Services ( IMS)especially William Helsel, MS; William Kammerer; ChristaAnderson; and William Howe, for their assistance with this report and for their management of the MinimumData Elements.

Program, scientific, and editorial staff from CDCs National Center for Chronic Disease Prevention andHealth Promotion, including Kevin T. Brady, MPH; Ralph Coates, PhD; Christie Eheman, PhD; Linda G. Elsner;James Gardner, MSPH; Cherie Gray, MA; Judy Hannan, RN, MPH; Herschel Lawson, MD; Kevin Moran;

Steven L. Reynolds, MPH; Phyllis Rochester, PhD; Janet Royalty, MS; Florence Tangka, PhD; Susan True, MEd;and Mary White, ScD, MPH.

Contributors to the development and editing of this report from the NBCCEDP state, territorial, and tribalgrantees, including Pamela W. Balmer, Illinois Department of Public Health; Dianah Bradshaw, RN, MSHA,North Carolina Department of Health and Human Services; Helena Calhoun, Illinois Department of PublicHealth; Sherrell Holtshouser, MPH, RN, Alaska Department of Health and Social Services; Bradley J. Hutton,MPH, New York State Department of Health; Cheryl M. Jones, RN, Oklahoma State Department of Health;Chris Knutson, MN, ANP, Alaska Department of Health and Social Services; Nikki L. Lyttle, MS, WestVirginia Department of Health and Human Resources; Lana Nelson, Kaw Nation of Oklahoma; ConradOtterness, MPH, South Carolina Department of Health and Environmental Control; and Hyral Smith, RN,

Iowa Tribe of Oklahoma. Palladian Partners, Inc., for their graphics, layout, and design services.

All national and local partners of the NBCCEDP for their continued support in increasing womens access toscreening and treatment services, developing strategies for improving rescreening rates, and implementingpublic education and outreach strategies to reach NBCCEDP-eligible women in priority populations.

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ForewordBy Susan True, MEd, Director, NBCCEDP

The National Breast and Cervical Cancer Early Detection Program (NBCCEDP), which was created in responseto the Breast and Cervical Cancer Mortality Prevention Act passed by Congress in 1990, is both the first andthus far the only national cancer screening program in the United States. As a consequence, its successesand challenges are relevant not only to those who manage, implement, and are served by the program, but

to policy makers, the health care system, the public health community, and the general public as well. CDC ispleased to offer this summary of the accomplishments of the NBCCEDP from 19912002. Through it the readermay gain insight into the complexity of this program designed to improve the quality of breast and cervical cancer screening and early detection services and assure access to them for women who, for a variety of reasons,would otherwise not receive these services.

Clients of the NBCCEDP have no health insurance that covers screening, and little or no discretionary income;they often have no medical home. They represent minority populations and those who are geographically orculturally isolated from existing services. Most are over 40 but not yet 65often working as well as caring forgrandchildren or aging parentswith little social support or scheduling flexibility. Educating and motivatingthese women to want screening; ensuring that services are convenient, accessible, and provided in a respect

ful, culturally competent manner; and effectively communicating results, recalling, and assisting women whoneed additional services are among the responsibilities of every funded program. Grantees are held to highstandards for reporting services provided, their appropriateness, timeliness, and outcomes. Quality assurance,including provider education and the development of data review processes to identify problems, is a criticalcomponent of this work.

This report summarizes the first 12 years of the NBCCEDP. During this period, the program grew from 8 to 68grantees and from serving thousands to serving hundreds of thousands of women each year. Both CDC andMedicare policy changes influenced which women were served, and how they were served, during this periodThe program has had a rich history, with many lessons assimilated into the way NBCCEDP is managed, implemented, and evaluated today.

Perhaps even more exciting, however, is the programs future. A strategic evaluation plan will guide our assessment of program components and outcomes for the next 5 years. We are exploring the impact of infrastructurechoices on grantees costs to deliver services and their success in eliminating disparities among women in theprogram. An evolving performance-based system for making awards is ensuring that federal dollars are wellspent. By strengthening partnerships with our sister federal programs, private partners, and comprehensive cancer control programs, we are ensuring an environment in which the NBCCEDP can increasingly be a significantcatalyst for reducing the illness and death associated with breast and cervical cancer in communities across theUnited States.

This report demonstrates our growing capacity to accomplish that goal. Future reports will update the data andshow the impact of our performance improvement initiatives.

Susan True, MEd

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Executive SummaryThe Division of Cancer Prevention and Control at the Centers for Disease Control and Prevention is pleasedto release the first programmatic summary report of the National Breast and Cervical Cancer Early DetectionProgram (NBCCEDP). The NBCCEDP helps low-income, uninsured, and underserved women gain access topotentially lifesaving screening programs for the early detection of breast and cervical cancer.

In 2004, an estimated 215,990 new cases of invasive breast cancer and 10,520 new cases of invasive cervica

cancer will be diagnosed in the United States, and about 44,010 women will die of these diseases combined.1Many of these deaths could be avoided by increasing the cancer screening rates among women at risk. TheU.S. Preventive Services Task Force (USPSTF) recommendations state that timely mammography screeningamong women aged 40 years or older could prevent a significant number of all deaths from breast cancer.2

Papanicolaou (Pap) tests can detect cervical cancer at an early stage when it is most curable, and can preventthe disease altogether when precancerous lesions are found during the test and are treated in a timely manner.

Despite the availability of screening tests, deaths from breast and cervical cancer occur more frequently amongwomen who are uninsured or under-insured. Mammography and Pap tests are underused by women who haveless than a high school education, are older, live below the poverty level, or are members of certain racial andethnic minority groups.3 To help improve access to breast and cervical cancer screening among these at -risk

populations in the United States, Congress passed the Breast and Cervical Cancer Mortality Prevention Actof 1990, which created the NBCCEDP. The program, funded at $30 million in fiscal year (FY) 1991, eventually grew to a nationwide program that received over $192 million in FY 2002. During this time, 1,175,759women received 2,038,118 mammograms, and 1,329,523 women received 2,305,936 Pap tests through theNBCCEDP.

The intent of this report is to summarize the first 12 years of the NBCCEDP, from 1991 through 2002.Information on the programs framework and history are given in addition to data on breast and cervicalcancer screening results and outcomes for women served through the program. This report provides a basis forresearchers to develop research questions that can be answered with more specific and advanced analysesusing both the national and program-specific data. Individual programs can use these data to help guide activities to improve program management, evaluation, data management, and outreach activities.

The NBCCEDPs comprehensive approach to breast and cervical cancer control ensures that not only medicallyunderserved women benefit from this early detection effort, but that all women gain from the educational activities, public and private partnerships, and quality assurance standards implemented in our funded programs.At the state and community level, the development of early detection programs has resulted in a new organizational capacity and infrastructure for cancer control, increased staff resources and expertise, enabled multiplecollaborative partnerships in the private and public sectors, built state and community coalitions, and promoteda greater understanding of the challenges in delivering preventive health services to women who are medicallyunderserved. By presenting this report, the NBCCEDP hopes to demonstrate the continued momentum and commitment of federal and state governments to comprehensive screening programs that work to close the gap inhealth disparities, improve early detection rates, and reduce the illness and death from all cancers.

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Overview ofthe NBCCEDP

Early detection throughscreening is our best

defense against morbidity

and mortality from breastand cervical cancers andprecancers.

Julie Louise Gerberding, MD, MPHDirector, Centers for Disease Control

and Prevention

The National Breast andCervical Cancer EarlyDetection Program

(NBCCEDP) is a nationwide,comprehensive public healthprogram that helps uninsured andunderserved women gain accessto screening services for the earlydetection of breast and cervicalcancer.

Breast cancer is the most commonly diagnosed cancer and thesecond leading cause of cancer

death among women in the UnitedStates.1 Screening for and earlydetection of breast and cervical cancer reduces death ratesand greatly improves cancerpatients survival.2 However, thereis a disproportionately low rate ofscreening among women of certainracial and ethnic minorities andamong under- or uninsured women,which creates a wide gap in health

outcomes between such womenand other women in the UnitedStates.3 To address this healthdisparity, Congress authorized theNBCCEDP in 1990, giving CDCthe ability to implement a nationalstrategic effort to increase access tomammography and Pap test screenings for women in need.

The NBCCEDP is implementedthrough cooperative agreementswith state and territorial healthdepartments, tribes, and tribalorganizations (grantees). Sixtypercent of federal funds receivedby a grantee must be expendedon direct services for women.

The other 40% of federal fundscan be used to support programmanagement, public and providereducation, quality assurance, andsurveillance and evaluation activities. The NBCCEDP is intendedto be the payer of last resort forscreening services; therefore, grantmonies cannot be used to pay forservices if other coverage is available through any state fund, private

health insurance, or other government health benefits programsuch as Medicaid or Medicare.Grantees are also required to contribute $1 for every $3 of federalfunds. Grantees contract with abroad range of provider agencies to deliver screening and otherservices, and each grantee hasdeveloped its own delivery systembased on available resources.

The NBCCEDP is directed to low-income, uninsured women aged1864 from priority populations.The program provides clinical breastexaminations, mammograms, andPap tests for eligible women whoparticipate in the program as well asdiagnostic testing for women whosescreening outcome is abnormal.Although treatment services are not

directly paid for by the NBCCEDP,programs have always beenrequired to identify resources forthe treatment of breast and cervicalcancer found through the program.To assist programs in identifyingthese resources, in 2000 Congressgave the states the option to providemedical assistance for treatmentthrough Medicaid (PL 106-354). Inaddition to screening and diagnostic

services, the legislation authorizingthe NBCCEDP (PL 101-354) pro-vided for public and professionaleducation, quality assurance, and

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surveillance and evaluation systemsto monitor program activities. Eachgrantee reports to CDC a subsetof program data known as the

minimum data elements (MDEs).The MDEs are a set of standardized data elements considered tobe minimally necessary for granteesand CDC to monitor client demographics and clinical outcomes ofwomen screened with NBCCEDPfunds. The MDEs also are usedto establish NBCCEDP policiesand practices, assess the nationalprograms screening outcomes, and

respond to the information needsof CDC stakeholders and partners.A description of the MDEs can befound inAppendix I.

Since the NBCCEDP began in1991, CDC has expanded theprogram to all 50 states, 4 U.S.territories, the District of Columbia,and 13 American Indian/AlaskaNative tribes or organizations.

Through the hard work of dedicated national partners, statehealth officials, community leaders, medical care providers, andothers involved in the program,the NBCCEDP has provided morethan 4 million breast and cervicalcancer screening and diagnostictests to almost 1.75 million low-income, uninsured women. From1991 through 2002, 1,175,759

women have received 2,038,118mammograms, and 1,329,523women have received 2,305,936Pap tests through the NBCCEDP(Figures 14). Because of thesescreenings, 9,956 cases of breastcancer, 12,187 cases of precancerous cervical lesions, and 832 casesof invasive cervical cancer werediagnosed.


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Figure 1. Number of Women Receiving Mammograms Through the NBCCEDP, 19912002*

300,000

Women returning for at least one subsequent program mammogram Women receiving a first program mammogram

9,309

494

250,000

135,268

men 200,000 130,769

90,392

rofWo 116,803101,421

66,047 90,808

150,00043,305e

Numb

100,000 25,288149,469

134,806127,622 119,584 121,364102,309 118,453 118,084

50,000 78,26067,82637,982

0 1991/ 1993 1994 1995 1996 1997 1998 1999 2000 2001 20021992

Calendar Year

*During this period, 1,175,759 women received at least one paid mammogram through the NBCCEDP.

Figure 2. Number of Mammography Screenings Provided Through the NBCCEDP, 19912002*

300,000

250,000

200,000

150,000

100,000

50,000

0

292,601dediv 260,119or 242,048P 230,504 227,544s 214,877ma 198,193rgomm 148,896a

ofM

105,940

re 78,527

Numb

38,869

1991/ 1993 1994 1995 1996 1997 1998 1999 2000 2001 20021992

Calendar Year

*During this period, 2,038,118 mammograms were paid for directly with program funds, and 309,229 unpaid mammograms wereprovided to women receiving at least one other NBCCEDP-funded service.

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Figure 3. Number of Women Receiving Pap Tests Through the NBCCEDP, 19912002*

300,000

men

250,000

rofWo200,000

e 150,000

Numb

100,000

50,000

0

Women returning for at least one subsequent program Pap test Women receiving a first program Pap test

130,222

128,86195,52375,268 120,421107,567

97,304

55,674

15,79438,335

150,9662,234 137,364 129,002 131,813 136,955 142,799121,965119,516

98,069 100,466

60,608

1991/ 1993 1994 1995 1996 1997 1998 1999 2000 2001 20021992

Calendar Year

*During this period, 1,329,523 women received at least one paid Pap test through the NBCCEDP.

Figure 4. Number of Pap Test Screenings Provided Through the NBCCEDP, 19912002*

300,000

250,000

200,000

150,000

100,000

50,000

0

291,966284,591

269,754de 250,699div 236,120 229,158o 225,015rsPst 184,888

apTe

147,531

ofP

120,574

re

Numb

65,640

1991/ 1993 1994 1995 1996 1997 1998 1999 2000 2001 20021992

Calendar Year

*During this period, 2,305,936 Pap tests were paid for directly with program funds, and 85,783 unpaid Pap tests were provided towomen receiving at least one other NBCCEDP-funded service.

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History of theNBCCEDPBegi

ildi

l lic)

ll

Nati i

i li l

i ( lic)

l )

2000

( l )

l

i lf ( l )

1991

nning of the NBCCEDP

1992

Implementation of the Capacity Bu ng

Program

1993

Amendment of the Breast and CervicalMorta ity Prevention Act of 1990 (PubLaw 103-183

1996

Estab ishment of mammography ageguide ines

1997

onw de expansion of the NBCCEDP

1998

Exclusion of Med care-e gib e women

Passage of Womens Health Research and

Prevent on Amendments of 1998 PubLaw 105-340

1999

Passage of Balanced Budget RefinementAct of 1999 (Pub ic Law 106-113

Implementation of Breast and CervicalCancer Prevention and Treatment Act of2000 Pub ic Law 106-354

Cervical cancer screening po icy change

2001

Passage of Native American Breast andCervical Cancer Treatment Techn caAmendment Act o 2001 Pubic Law 107-121

Prior to 1990, CDCs Division ofCancer Prevention and Control laidthe groundwork for building earlydetection programs by funding a

few states to work on the designand implementation of breast andcervical cancer screening services for medically underservedwomen. In part through the advocacy of CDCs national partners,Congress recognized the importance of establishing a nationwideprogram and passed the Breastand Cervical Cancer MortalityPrevention Act of 1990. This

landmark legislation authorizedCDC to establish the NationalBreast and Cervical CancerEarly Detection Program(NBCCEDP). To begin the effort,Congress appropriated $30 million in fiscal year (FY) 1991 tofund efforts by the first eight statesto establish early detection programs. Early lessons showing thatindividual programs needed more

time for capacity building led tothe development of a two-stagefunding process. The CapacityBuilding Program offered granteesthe opportunity to recruit personneland design service delivery. Afterthey developed their infrastructure,grantees were funded through acompetitive application process tobegin screening women primarilyfrom low-income, under- or unin

sured, and racial or ethnic minoritygroups. Since then, the NBCCEDPhas experienced substantial growthand a number of legislative andpolicy changes.

1991Beginning of theNBCCEDP. CDC funded eightstates in fiscal year (FY) 91 andadded four more in FY 92.

1992Implementationof the Capacity BuildingProgram. CDC funded anadditional 18 states to developthe infrastructure necessary todeliver screening programs.

1993Amendment of

the Breast and CervicalMortality PreventionAct of 1990 (Public Law103-183). This amendmentauthorized NBCCEDP fundingfor American Indian/AlaskaNative tribes and tribal organizations and required CDC togive funding priority to thosestates with a high diseaseburden from breast or cervical

cancer. 1996Establishment

of mammography ageguidelines. The NBCCEDPestablished a goal that 75% offederally funded mammogramsbe provided to women 50 yearsof age or older.

1997Nationwide expansion of the NBCCEDP.

Funding was provided to 50states, the District of Columbia,5 territories, and 13 tribes ortribal organizations.

1998Exclusion ofMedicare-eligible women.As a result of Medicare adding these cancer screeningservices under the Part B coverage option, women enrolled in

MedicarePart B were excludedfrom the NBCCEDP-eligiblepopulation.

1998Passage of WomensHealth Research andPrevention Amendments of1998 (Public Law 105-340).Congress allowed the NBCCEDPto add case management asa program component and

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enabled program grantees tocontract with for-profit entities.

1999Passage ofBalanced BudgetRefinement Act of 1999(Public Law 106-113).Congress allowed the NBCCEDP

to raise the reimbursementrate for Pap tests from $7.15 to$14.60 and to adjust the rateannually for inflation.

2000Implementation ofBreast and Cervical CancerPrevention and Treatment

Act of 2000 (Public Law106-354). Congress gavestates the option to providemedical assistance throughMedicaid to eligible womenwho were screened and foundto need treatment for breast orcervical cancer or precancerousconditions.

2000Cervical cancerscreening policy change.NBCCEDP grantees wereencouraged to focus cervicalcancer screening on women

who had rarely or never beenscreened and to decrease over-screening of women enrolled inthe program.

2001Passage of NativeAmerican Breast andCervical Cancer TreatmentTechnical Amendment Actof 2001 (Public Law 107121). Congress amended Title

XIX of the Social Security Act toclarify that Indian women withbreast or cervical cancer whoare eligible for health servicesprovided under a medical careprogram of the Indian HealthService or of a tribal organization should be included in theoptional Medicaid eligibility category of breast or cervical cancerpatients added by the Breast and

Cervical Cancer Prevention andTreatment Act of 2000.

As a result of the extensive systemof data collection, analysis, andongoing communication with grantees, the NBCCEDP has successfullyenacted modifications to improve

the programs structure and to moreclosely define those eligible forscreening services. The changesthat have had the most impact onthe program were the issuanceof mammography guidelines in1996, which required that 75% ofprogram-paid mammograms beprovided to women 50 years ofage and older, and the exclusion ofMedicare-eligible women in 1998,

which resulted in a temporarydecrease in the number of womenreceiving screening servicesthrough the NBCCEDP (Figures14). The program establishedother specific policies not listedabove that have had the cumulative effect of focusing the deliveryof services on women most likelyto be rarely or never screened andthose at or below 250% of the

poverty level.4

Through the hardwork of those at state and territorial health departments, tribes, andtribal organizations, and with theassistance of national, voluntary,and private organizations, theNBCCEDP has grown significantlyand is now filling a critical gap inthe screening for and early detection of breast and cervical cancerin the United States.

Components ofthe NBCCEDPBreast cancer and cervical cancerare two very distinct diseases andrequire markedly different methods for their detection, diagnosis,and treatment. For breast cancer,

a combination of clinical breastexamination (CBE) and mammography can generally detect anabnormality at an early stage ofthe disease. For cervical cancer,Pap tests can detect precancerous lesions years before invasivecancer becomes apparent. While

these screening services are key toearly detection of breast and cervical cancer, their existence alone isnot sufficient to achieve a reductionin the illness and death associatedwith these diseases. Other activitiesmust also occur to support directscreening services. The NBCCEDPhas eight major components.

Program Management

The overarching goal of programmanagement is to implement allprogram components in accordance with established policiesand procedures; to identify andleverage resources; and to provide leadership in planning,coordination, implementation, andevaluation. Program managers arerequired to

Establish a sound fiscal systemthat tracks and monitors program expenditures.

Develop an accurate budgetrequest that corresponds with theprograms work plan.

Recruit and develop a qualifiedand technically diverse staff.

Develop an annual work plancontaining specific, measurable,time-phased, and realistic goalsbased on a thorough understanding of program components.

Evaluation

The NBCCEDP defines evaluationas the systematic documentationof the operations and outcomes

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of a program and the compari

son of these results with a set ofexplicit standards or objectives.Evaluation activities must becarefully planned and implemented to ensure that programdata are credible and useful. Thisinformation is critical to guidingoperations and ensuring programsuccess.

NBCCEDP Conceptual Framework

at

Daa M nagement

ya

Qulit Assurance

Q tu enalityImprove

m

Program Management

Results

Professional Screening &Development

DiagnosticPartnerships Services

Case ManagementTracking

Recruitment Follow-upPublic EducationOutreachInreach

Healthy Women

Evaluation

Partnerships

Partnerships are critical to theNBCCEDP cancer control efforts.A successful national program tocontrol breast and cervical cancerdepends on the involvement of avariety of committed partners atthe local, state, and national levels. Such partners help strengthenand maintain the NBCCEDP bycontributing their expertise, connec

tions, resources, and enthusiasm tothe activities of the program.

PARTN ERSH IP The Iowa Tribe of Oklahoma, the Kaw Nation Breast and Cervical Cancer EarlyDetection Program (BCCEDP), and the Oklahoma Take Charge! Program of theOklahoma BCCEDP are collaborating to serve the women living in and around therural Payne County community of Perkins in north-central Oklahoma.

The Iowa Tribe operates a clinic in Perkins that serves tribal and other community members. The Tribal Health Director wanted to be sure that all women in the area had access to the BCCEDP. The collaboration of the three programs allows services to be provided for tribal members through the Kaw Nation BCCEDP, for other eligible women through the Take Charge! Program, and for insured women through the clinics medical staff. Mammography services are provided by a mobile unit operated by the Oklahoma Breast Care Center in Oklahoma City.

Outreach strategies include displaying posters in community businesses and tribaloffices, placing announcements in local and tribal papers, and setting up boothsat tribal functions. The population of eligible women in the area is small and clinicutilization is limited; to date, the program has served 50 women. However, thepartners remain committed to making the services available to all area women.

ProfessionalDevelopment

Professional development activitiesin the NBCCEDP are designed toimprove the ability of health careproviders to screen for and diagnose breast and cervical cancer

so that women receive appropri-ate and high-quality screeningand diagnostic services. Related

activities include increasing theimpact of the program on breastand cervical cancer mortality andimproving providers performancein following up on abnormalscreening results.

Recruitment

The purpose of recruitment is toincrease the number of women in

priority populations receiving clinical screening services by raisingawareness, addressing barriers,

and motivating women to usethese screening services. Raisingawareness through public education involves the systematic designand delivery of clear and consistent messages about breast andcervical cancer and the benefits ofearly detection using a variety ofoutreach and inreach strategies topromote the clinical services avail-able for program-eligible women.

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Outreach relies on comprehensive,tailored, population-specific strategies designed to reach and bringwomen from NBCCEDP prioritypopulations into clinical screening services. Inreach involvesapproaching program-eligible priority women who are using otherhealth services (e.g., getting a flushot, receiving care for diabetes)

and recruiting them into NBCCEDP.

The essential elements of recruitment are

Obtaining input from partners,including representatives frompriority population groups, inassessing needs and developing comprehensive plans forpublic education, outreach, and

inreach. Developing or revising, as

needed, a public education andcomprehensive outreach workplan that includes an appropriatemix of broad-based awareness-raising, community education, andone-on-one outreach strategies.

Developing and using methodsto evaluate the effectiveness of

comprehensive outreach andinreach strategies, as well aspublic education messages, inrecruiting women into screening.

Placing priority for using program resources on implementingactivities that are most effective

in recruiting eligible women frompriority populations for screening

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PROFESS ION AL DEV ELOPMEN T

Alaskas Breast & Cervical Health Check (BCHC program staff has begun us ng amultifaceted approach to improving mammography rates. BCHC awarded a $15

bonus fee to c inics for each woman aged 5064 who had amammogram within 60 days of her c inical breast examination CBE). Program data were used to identify BCHC c inicsites w th ow mammography rates. These sites were notifiedof their rates and shown comparison rates from simi ar-s zedsites where rates were higher. These data were accompan edby information about strategies for improving mammographyrates, inc uding the use of motivational communications basedon the Stages of Change Theory. C inics were supp ied withspecially designed tick ers that help s ify and makereca efforts reliab e and t mely. The tick ers are approprfor use with any patient in the providers practice, reducing

his or her impulse to put time into mp ementing multip e tracking systems. Tips fora Qua ity Mammogram cards were d stributed to patients at all BCHC c inics. Layoutreach staff received ntensive tra ng n motivational interviewing ski ls basedon Stages of Change Theory. C inicians were offered training in the vertical stripmethod of CBE and breast diagnostic algorithms.

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R E C R U I T M E N T

On April 1, 2003, the I inois Breast and CervicalCancer Program launched a statewide enrollment campaign target ng African American, rura , and Hispanicwomen between the ages of 50 and 64. Focus groupswere used to obta nput on everyth ng from appropri

ate take-home messages to which co or scheme was most visually appealing. Theresu t was a h ghly nteractive campaign incorporating mass media and face-to-face communications encouraging women to take charge of their health. Tacticsinc uded direct mail, coa ition bu ding, enrol ment day events, radio advert sements, faith-based outreach, and a peer advocates program. Direct mai

radio advertisements turned out to be the two most successful strateg es in thiscampa gn.

Direct mai pieces conta ned the toll-free Womens Health-L ne number for womento ca for referrals, as well as a postage-free rep y card that could be torn off andmai ed back. Paid rad o advertisements ran in 60-second spots, promoting theprogram and the Womens Health-Line. Combined, these two strateg es resulted inmore than 2,200 referrals. Overall, the campaign motivated approximate y 4,500women to contact the program during a 9-month period. In terms of actual enrollments, 2,900 more women signed up for the program than enrolled during thesame time period the previous year. This represented a 49% increase n enrollmentovera and a 48% increase in enrollment by racial or ethnic m nority women.

Data Management

The collection, analysis, and useof quality data are essential forguiding program efforts. To meet

CDCs data management expectations, a grantee is required to

Establish and maintain a datasystem for collecting, editing,and managing the data neededto track a womans receipt ofscreening, rescreening, diagnostic, and treatment services.

Establish mechanisms forreviewing and assessing the

completeness, accuracy, andtimeliness of data collected.

Establish protocols to ensure thesecurity and confidentiality of alldata collected.

Collaborate with other existingsystems to collect and analyzepopulation-based information

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on breast and cervical cancer,including incidence and mortality rates, cancer stage atdiagnosis, and the demographicprofile of cancer patients.

Quality Assurance

The NBCCEDP provides guidanceon quality assurance and improvement methods that use data toidentify training needs, improveservices, and ultimately ensurewomen receive high-quality care.The overarching intent of qualityassurance and improvement (QA/QI) activities is to

Ensure the quality of services

delivered through the NBCCEDP.

Describe the role of QA/QIwithin the broader context ofpublic health.

Promote best-practice outcomesas benchmarks for improvingclinical services for programwomen.

Health agencies that participate inthe NBCCEDP use mammographyfacilities certified by the AmericanCollege of Radiology and cytology laboratories that follow theClinical Laboratory ImprovementAmendments of 1988. CDC provides screening and diagnosticguidelines to all NBCCEDP grantees and helps them evaluate theappropriateness and quality oftheir clinical services. Under CDCs

guidance, all grantees developstrategies to ensure that womenreceive the best care possible.

ion

Q U A L I T Y A S S U R A N C E

The foundation of any program for the early detection of breast and cervicalcancer is quality data. Surveillance plays an important role in identifying dataproblems and establishing successful quality assurance activities to correct thoseproblems. One of the challenges that the West Virginia Breast and CervicalCancer Screening Program (WVBCCSP) faced was reaching a minimum of 20%in the never or rarely screened category (percentages ranged from 3.9% to8.7%). Program staff knew this high-risk population of women existed in West

Virginia, but the challenge was figuring out why they were not being capturedin the data. During 2002, routine data surveillanceidentified an unusual increase in the number of womenwho answered unknown to the question abouthaving had a prior Pap test. This increase promptedfurther investigation and resulted in a chart audit.Program researchers suspected that the key to solvingthe problem was related to the unknown prior Paptests.

Indeed, the chart audit identified a misconceptamong WVBCCSP providers. Many thought that if a woman did not recall theexact date of her previous Pap test, they had to mark unknown on her Patient

Data Form. Once the WVBCCSP staff recognized this misconception, they workeddiligently to correct the problem by communicating with providers and reassuringthem that partial or estimated dates were acceptable. To date, the WVBCCSPhas performed three chart audits, and each has been essential in increasing theprograms never or rarely screened percentages. Prior to the implementation ofroutine chart audits, the WVBCCSPs overall never or rarely screened percentage was 4.5%. That percentage increased to 24.9% following the completionof the first chart audit and has since remained above the mandated 20%.While chart audits proved to be a valid method of recapturing never or rarelyscreened populations for the WVBCCSP, they alsoperhaps more importantlyemphasized the impact of provider education on data quality.

SCREEN IN G

The heart of theNorth CarolinaBreast and CervicalCancer ControlProgram (NCBCCCP) case management training is its Case Management Kit.The NC BCCCP compares the kitto a cookbook. Experienced cooksand new cooks use a cookbookdifferently. The Case ManagementKit is designed to provide as muchguidance as possible to new casemanagers but still allow experienced case managers to modifytheir approaches with creativity andconfidence.

The Case Management Kit is ahalf-inch, indexed 3-ring binderthat contains everything the NCBCCCP coordinator needs to fol-low the case management system.Contents include an overview ofNorth Carolinas case managementrationale and philosophy; PowerPointnotes; an algorithm used in trainingon the case management process;all forms needed to document casemanagement, including a needsassessment form and six care plantemplates; and the NC BCCCP case

management policies.

Screening

Screening and diagnostic servicesare the heart of the program.

Screening encompasses five distinctly different program activities:screening, tracking, follow-up, casemanagement, and rescreening.These activities work together toensure that women in the programreceive timely and appropriatefollow-up. The NBCCEDP reimburses states and other granteesfor clinical breast exams, screening mammograms, pelvic exams,

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Pap tests, and some diagnosticprocedures. State health agenciescontract with a broad range ofagencies to coordinate and deliverscreening and diagnostic services.

NBCCEDPResearch andEvaluationThe data collected by theNBCCEDP facilitate the identification, analysis, and resolution ofimportant issues in the provision ofbreast and cervical cancer screening to underserved women. Eachgrantee submits to CDC minimum

data elements (MDEs) that areuseful for planning and evaluation functions and as a basis forscientific studies. A selected list ofscientific publications illustratingthe breadth and importance ofresearch using the MDEs is includedinAppendix II. As noted in thislist of publications, researchers haveexamined such issues as how frequently Pap tests are needed once

a series of tests are reported asnegative,5 differences in screeningmammography between the UnitedStates and the United Kingdom,6

and racial and ethnic differences inscreening outcomes.7 Additionally,analysis of NBCCEDP data hasbeen valuable in determining thatlinkage of the MDEs with statecancer registries is important in consistently and accurately reportingcancer-stage data. This has led togreater cooperation between unitsin the health departments and fromthe community at large.

Of equal importance is the contribution of the MDE data set topublic health practice. Designedto monitor the extent to whichfunded programs in the NBCCEDPachieve the objectives of the

authorizing legislation, the MDEsprovide demographic, service,and outcome data that have had adramatic impact on policy and program development. For example,

Descriptive reports of MDE dataallow CDC to quickly identify

programs struggling to meetclinical or service standards setfor the national program andprovide technical assistancebefore quality declines. Thesereports also guide the development of training for grantees andcontribute to the identification ofbest practices for dissemination.

Monitoring the MDEs may resultin the identification of common deficiencies that suggestthat system-wide changes areneeded. New national policiesor partnerships may result. Anexample is the relationship CDChas developed with the MigrantClinicians Network to enhancethe cancer-related case management of migrant, homeless, andmobile people.

Quality assurance (QA) is amajor outcome of effective useof MDEs. Grantees can evaluatethe work of individual providersagainst a standard and identifyoutliers for whom QA interventions may be needed. TheMDE system provides essentialinformation on the timeliness,adequacy, and appropriatenessof follow-up of clinical care,

ensuring that problems areaddressed and changes made.

Outcomes of MDE reportingactivities have resulted in significantly increased funding, allowingadditional women to be screenednationwide for breast and cervical cancer. In addition, MDEdata are useful in evaluating andinfluencing the development of

updated national cancer screeningrecommendations and guidelines,tracking cancer rates amongwomen who are never or rarelyscreened, testing the efficacyof screening technologies, anddeveloping models to addressother cancers. Data from the

NBCCEDP support performance-based budgeting and the effectivestewardship of taxpayers dollarsand public trust. Data about who isbeing served, with what services,within what time frame, and withwhat results allow CDC and itspartners to assure the public thatthe NBCCEDP provides high-quality services to eligible womenand contributes significantly to the

reduction of the breast and cervicacancer burden in the country.

ScreeningResults andOutcomes inthe NBCCEDPThis report summarizes the datasubmitted by grantees from 1991through 2002 on breast and cervical cancer screening participation,screening test results, diagnosticprocedures performed, and finaldiagnoses. In addition to summaryresults, more detailed data are presented by time period (19911995,19962000, and 20012002) inthe Data Tablessection. Most

screening outcomes are reportedby first and subsequent screening round because outcomesfrom the subsequent rounds in theNBCCEDP are more likely to reflectincidence of disease rather thanprevalence. A womans first program screening round is defined asher first NBCCEDP mammogram orPap test. In reporting subsequentscreening rounds, we excluded

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results for women whose initialexam led to a final diagnosis ofcancer. All screening result distributions, diagnostic follow-up rates, andcancer detection rates estimatedfor racial/ethnic groups wereage-adjusted to the populationof women receiving mammo

grams and Pap tests through theNBCCEDP in 2000 using the directmethod.8 A more detailed description of the methods used to obtainall breast and cervical cancerscreening results and outcomes canbe found inAppendix III.

Breast Cancer

ScreeningIn the NBCCEDP, breast cancerscreening includes both mammography and clinical breast examinations(CBEs). Mammography is currentlythe best available procedure fordetecting breast cancer in itsearliest, most treatable stageanaverage of 1 to 3 years beforethe woman can feel the lump.9

Additionally, CBEs are able todetect some of the few breast cancers that screening mammographymay miss.10 Thus, NBCCEDP breastcancer screening includes bothtypes of examinations.

In the NBCCEDP, a breast cancerscreening round can be initiated byeither a mammogram or a CBE .11

Mammography test results arecategorized using the American

College of Radiology (ACR) BreastImaging Reporting and DataSystem (BI-RADS).12 This system isa quality assurance tool designedto standardize mammographicreporting and facilitate outcomemonitoring. Abnormal mammogram results that signal the needfor additional diagnostic testinginclude suspicious abnormalities

(BI-RADS category 4), thosethat are highly suggestive of amalignancy (BI-RADS category5), and incomplete assessments(BI-RADS category 0). Diagnostictesting also is considered if themammogram was done outsidethe program but the results arethought to have been abnormal. If

a suspicious abnormality is foundduring a CBE, diagnostic work-upis required regardless of the initialmammogram findings. If diagnosticwork-up is required or initiated inthe NBCCEDP, documentation ofdiagnostic tests performed andthe final diagnosis is expected.Additionally, for women diagnosedwith breast cancer, documentationof the cancers stage at diagnosis,

the tumor size, the status of treatment, and the date of treatmentinitiation is required.

The Breast and Cervical CancerMortality Prevention Act of 1990requires programs to take all appropriate measures to ensure thatwomen with abnormal screeningresults receive the necessary

follow-up services. CDC requiresprograms to establish and maintaina proactive surveillance systemfor the timely and appropriatereferral and follow-up for womenwith abnormal or suspicious testresults whose clinical services arepaid for in whole or in part by the

NBCCEDP funds. The NBCCEDPpays for select diagnostic services,including diagnostic mammography, repeat CBEs, breastultrasounds, fine-needle aspirations, surgical consultations, andbreast biopsies.

Breast Imaging Reporting and DataSystem (BI-RADS)

Assessment Categories

Category 0Assessment incompleteneed additional imagingevaluation

Category 1Negative

Category 2Benign finding

Category 3Probably benignshortinterval follow-up suggested

Category 4Suspicious abnomal-itybiopsy should beconsidered

Category 5Highly suggestive ofmalignancyappropriate

action should be taken

Breast CancerScreening Participation

When the NBCCEDP began in1991, CDC followed recommendations for breast cancer screeningthat emphasized the value ofscreening mammography bothfor women aged 4049 andfor women aged 50 or older.All CDC-funded programs couldscreen women in both of theseage groups. In 1996, however, theNBCCEDP established a more strin

gent age policy for funding breastcancer screening that would allowthe best use of limited resources.The new NBCCEDP policy requiredthat 75% of mammograms paidwith NBCCEDP funds be providedto women 50 years of age orolder. Consistent with the current age guidelines, most womenscreened in the program between1991 and 2002 were 5064

years of age at the time of their firstscreening (Figure 5).

Figure 6 illustrates the age distribution of women screened inthe program between 2001 and2002. The recent shift in the agedistribution of women receivingmammograms through the programis primarily due to a change in1998 to exclude women 65 years

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of age and older who are eligiblefor Medicare Part B coverage.

Figure 5. Age* Distribution of Women Receiving Mammograms Through the NBCCEDP, 19912002

65+10%

16%

404930%

6064

505944%

*Age at time of first mammogram.

Figure 6. Age* Distribution of Women Receiving Mammograms Through the NBCCEDP, 20012002

65+3%

606416% 4049

29%

505952%

*Age at time of first mammogram.

The racial and ethnic distributionof women receiving mammography through the NBCCEDP isshown in Figures 7 and 8. Since

the beginning of the program,approximately 88% of the womenscreened have been Hispanic/Latina, white, and black or AfricanAmerican (Figure 7). However,during 2001 and 2002 a slightly

higher percentage of womenscreened were Hispanic/Latinaand Asian/Native Hawaiian/Other Pacific Islander (Figure 8).

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Figure 7. Racial/Ethnic Distribution of Women Receiving Mammograms Through the NBCCEDP, 19912002

Other/Unknown3%

21%Hispanic/Latina

White50%

American Indian/Alaska Native

5%

Asian/Native Hawaiian/Other Pacific Islander

4%

Black/AfricanAmerican

17%

Figure 8. Racial/Ethnic Distribution of Women Receiving Mammograms Through the NBCCEDP, 20012002

Other/Unknown4%

27% White43%


4%


Hispanic/Latina

6%Black/African American16%

Breast CancerScreening Results

Figure 9 illustrates the age-specificpercentage of screening mammograms that are abnormal duringthe first and subsequent screen-

ing rounds for women screenedthrough the NBCCEDP between1991 and 2002. Overall, thepercentage of abnormal screening mammograms decreases withincreasing age, and the percentage of women with abnormal

mammography results is higherin the first screening round. Anunknown number of women arereferred to the program or seekout the NBCCEDP themselves afterpresenting with symptoms or afterhaving an abnormal CBE or

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Figure 9. Percentage of Screening Mammograms That Are Abnormal* Among Women in the NBCCEDP,by Age Group and Screening Round, 19912002

)

0.0

2.0

4.0

6.0

8.0

10.0

12.0

14.0

10.9

9,309

6.8

12.3

8.2

11.1

6.9

9.9

6.4 6.7

4.6

Fi

Percent(%

rst-round mammogramsSubsequent-round mammograms

>Total 4049 5059 6064 _65**

Age Group

*Includes the following mammogram results: suspicious abnormality, highly suggestive of malignancy, and assessmentincomplete.**Most women 65 years of age or older were not served through the NBCCEDP because of eligibility for Medicare Part B coverage.

Figure 10. Age-Adjusted* Percentage of Screening Mammograms That Are Abnormal** Among Women inthe NBCCEDP, by Race/Ethnicity and Screening Round, 19912002

0.0

2.0

4.0

6.0

8.0

10.0

12.0

14.0

10.9 11.0

7.0 6.9

10.7

8.3

6.1

10.7

6.6

7.6 7.9

11.5

)

Percent(%

First-round mammograms

Subsequent-round mammograms

Total* White Black/African Asian/Native American Hispanic/LatinaAmerican Hawaiian/Other Indian/Alaska

Pacific Islander Native

Race/Ethnicity

*Age-adjusted to the 2000 NBCCEDP population.**Includes the following mammogram results: suspicious abnormality, highly suggestive of malignancy, and assessment incomplete.

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mammogram elsewhere. As aresult, the percentage of womenreporting symptoms was alsogreater in the first screening round(11.0%) than in subsequent rounds(6.7%).

Figure 10 displays the age-

adjusted percentage of abnormalscreening mammograms by racialand ethnic origin of the programparticipants. From 1991 through2002 the age-adjusted percentageof abnormal screening mammograms for all women in theNBCCEDP was 10.9% and 7.0%for first and subsequent screeningrounds, respectively. Hispanic/Latina women had the highest

percentage of abnormal mammography screening results for both firstand subsequent rounds.

Tables 1.11.3 and Tables 2.12.3in the Data Tablessection ofthis report show the distribution,by time period, of all breast cancer screening results for womenscreened through the NBCCEDP. Ingeneral, the percentage of abnor

mal mammograms increased overthe 12-year time period covered inthis report.

Breast CancerScreening DiagnosticFollow-Up

Diagnostic follow-up in theNBCCEDP can be initiated basedon either an abnormal screeningresult or the level of concern ofthe patient or clinician. Diagnosticfollow-up is defined as any surgical or imaging procedures otherthan the screening mammogram orCBE, including additional mammographic views, ultrasound, a repeatCBE or surgical consultation, a

fine-needle or cyst aspiration, andbiopsy or lumpectomy. The age-specific biopsy rates per 1,000mammograms in the NBCCEDPare illustrated in Figure 11. Biopsyrates were inversely related towomens age. Figure 12 showsthe age-adjusted biopsy rates byracial/ethnic group. Regardless ofage, race, or ethnicity, the biopsyrates were substantially lower in

subsequent rounds. This result isexpected since many of the womenscreened for the first time in theNBCCEDP report having symptoms, have not been screenedbefore, or are referred to the program by another clinician due to asuspicious finding.

Tables 3.13.3 and Tables 4.14.3in the Data Tablessection ofthis report show, by time period,the rates of all diagnostic follow-up in women screened throughthe NBCCEDP. During the 12-yeartime period covered in this report,the rate of diagnostic follow-upincreased in all age groups.

Figure 11. Biopsy* Rates Among Women in the NBCCEDP, by Age Group and Screening Round, 19912002

Rateper1,000Mammograms

40.0 First-round mammograms Subsequent-round mammograms

35.0

30.0

25.0

20.0

15.0

10.0

5.0

0.0

Total 4049 5059 6064 _65

30.7

9,309

16.1

36.5

20.4

29.8

16.0

28.7

15.2

19.6

12.1

>

Age Group

*Diagnostic follow-up may be initiated on the basis of an abnormal CBE, abnormal mammogram, or a high level of concern by thepatient or clinician.

Breast CancerDetection

Figure 13 shows age-specific cancer detection rates (invasive and insitu combined) per 1,000 mammograms in the NBCCEDP. Thecancer detection rates generallyincrease with age; however, thereis a slight drop in rates for women65 years of age or older. The age-

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adjusted cancer detection rates areillustrated in Figure 14.

Figure 12. Age-Adjusted* Biopsy** Rates Among Women in the NBCCEDP, by Race/Ethnicity and ScreeningRound, 19912002

Rateper1,000M

ammograms

40.0

35.0

30.0

25.0

20.0

15.0

10.0

5.0

0.0

30.5

16.5

35.6

18.420.2 20.9

11.8

30.8

17.2

11.1

13.7

23.5

First-round mammogramsSubsequent-round mammograms



Race/Ethnicity

*Age-adjusted to the 2000 NBCCEDP population.**Diagnostic follow-up may be initiated on the basis of an abnormal CBE, abnormal mammogram, or a high level of concern by the patient or clinician.

Figure 13. Rates of Breast Cancer* Among Women in the NBCCEDP, by Age Group and Screening Round,19912002

Rateper1,000Mamm

ograms

12.0

10.0

8.0

6.0

4.0

2.0

0.0

9.1

3.7

8.1

3.2

9.0

3.5

11.3

4.4

8.9

4.0

First-round mammogramsSubsequent-round mammograms

>Total 4049 5059 6064 _65

Age Group

*Includes invasive breast cancer, Lobular Carcinoma in Situ (LCIS), Ductal Carcinoma in Situ (DCIS), and all other Carcinoma in Situ.

Overall,and adjusted for age, there are 9.4cases of invasive or in situ breastcancer diagnosed per 1,000 mammograms in the NBCCEDP. Thisrate is higher in white women, butlower in all other racial and ethnic

groups. Regardless of age, race,or ethnicity, the detection ratesfor carcinoma in situ and invasivecancer were substantially lower insubsequent rounds, since many ofthe women screened during the firstround were previously unscreened,symptomatic, or referred to the pro

gram by another clinician due to asuspicious finding.

Tables 3.13.3 and Tables 4.14.3in the Data Tablessection ofthis report show, by time period,the invasive and in situ carcinomadetection rates in women screened

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Figure 14. Age-Adjusted* Rates of Breast Cancer** Among Women in the NBCCEDP, by Race/Ethnicity andScreening Round, 19912002

0.0

2.0

4.0

6.0

8.0

10.0

12.0

9.4

3.6

11.5

4.0

7.0 7.1

3.4

9.3

4.0

3.1

2.3

5.8

Fi t

Rateper1,000Mammogram

s

rs -round mammogramsSubsequent-round mammograms



Race/Ethnicity*Age-adjusted to the 2000 NBCCEDP population.**Includes invasive breast cancer, Lobular Carcinoma in Situ (LCIS), Ductal Carcinoma in Situ (DCIS), and all other Carcinoma in Situ.

Figure 15. Positive Predictive Value (PPV)* of Abnormal Mammography Results** Among Women in theNBCCEDP, by Age Group and Screening Round, 19912002

6.4

10.9

l

0.0

2.0

4.0

6.0

8.0

10.0

12.0

14.0

7.9

5.1

6.1

3.5

7.7

4.8

6.4

10.9

12.5

7.8

Fi

PPV*and95%ConfidenceInterva

rst-round mammograms

Subsequent-round mammograms

_Total 4049 5059 6064 >65

Age Group

*The positive predictive value (PPV) was calculated by dividing the number of abnormal mammogram results leading to a finaldiagnosis of cancer by the total number of abnormal mammogram results.**Includes the following mammogram results: suspicious abnormality, highly suggestive of malignancy, and assessmentincomplete.

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through the NBCCEDP. In gen-eral, cancer detection rates haveincreased since the beginning ofthe program.

Positive PredictiveValue of AbnormalMammograms

The diagnostic value of a proce-dure is often defined by its positivepredictive value, or the measure(%) of times a positive test resultleads to diagnosis of disease.Here, the positive predictive value(PPV) of abnormal mammograms isdefined as the proportion of abnor-mal mammograms that lead to afinal diagnosis of breast cancer.

Figure 15 illustrates age-specificPPVs of abnormal mammograms

among women in the NBCCEDP.In general, first-round abnormalmammograms have a PPV of7.9, whereas subsequent-roundabnormal mammograms havea significantly lower PPV of 5.1.The PPVs are smaller for youngerwomen but increase with increas-

ing age. The variation by racialand ethnic group is shown inFigure 16. The PPV is signifi-cantly higher in black or AfricanAmerican women and whitewomen when compared to the PPVin Asian/Native Hawaiian/OtherPacific Islander and Hispanic/Latina women.

Tables 5.15.3 in the Data

Tablessection of this report showthese results by time period.

Figure 16. Positive Predictive Value (PPV)* of Abnormal Mammography Results** Among Women in theNBCCEDP, by Race/Ethnicity and Screening Round, 19912002

PPV*and95%Confidence

Interval

12.0 First-round mammograms Subsequent-round mammograms

10.0

8.0

6.0

4.0

2.0

0.0White Black/African Asian/Native American Hispanic/Latina

9.7

5.8

8.2

4.1

4.9

6.1 6.47.0

2.8

4.5

American Hawaiian/Other Indian/Alaska


Race/Ethnicity

*The positive predictive value (PPV) was calculated by dividing the number of abnormal mammogram results leading to a finaldiagnosis of cancer by the total number of abnormal mammogram results.**Includes the following mammogram results: suspicious abnormality, highly suggestive of malignancy, and assessmentincomplete.

Stage of InvasiveBreast Cancer at Timeof Diagnosis

The goal of screening for breastcancer is to detect the disease atits earliest and most treatable stageof development. Figure 17 illus

trates the age-specific distributionof early- versus late-stage detection of invasive breast cancer inthe NBCCEDP. From 1991 through2002, 9,956 women had a diagnosis of invasive breast cancer,and 74.0% of these cancers wereidentified at an early stage.

Tables 6.16.3 in the DataTablessection of this report showall breast cancer staging results byage and time period.

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Figure 17. Distribution (%)* of Early vs. Late Stage** Invasive Cancer at Time of Diagnosis in WomenScreened Through the NBCCEDP, by Age Group, 19912002

Percent(%)*

90.0

80.0 Early stage*** Late stage****70.0 Unknown stage

60.0

50.0

40.0

30.0

20.0

10.03.0

0.0Total 4049 5059 6064 _65

74.0

21.5

4.4

24.9

70.3

4.8 4.1

73.2

22.1

76.5

19.4

81.8

15.2

4.7

>

Age Group

*Totals may not add to 100% due to rounding.

**Staging information in the NBCCEDP data may not be consistent with that from cancer registries due to variation in type of information reported by individual programs.***Includes AJCC Stage I and II, and SEER summary local stage.****Includes AJCC Stage III and IV, and SEER summary regional and distant stage.Abbreviations: AJCC=American Joint Committee on Cancer; SEER=Surveillance, Epidemiology, and End Results.

CervicalCancer

ScreeningCervical cancer is largely preventable with appropriate screening.The standard screening method forearly detection of cervical carcinoma is the Pap test. This screeningtest has helped reduce the cervical cancer morbidity and mortalityrates and is the most cost-effectivecancer screening method avail-able.13 The U.S. Preventive ServicesTask Force strongly recommendsthat women between the ages of21 and 65 be screened regularlyfor cervical cancer.2

2001 Bethesda System Categories Used in the NBCCEDP

Negative for intraepithelial lesion or malignancy.

Atypical squamous cells of undetermined significance (ASCUS).

Low-grade squamous intraepithelial lesion (LSIL) encompassing: HPV,mild dysplasia/CIN I.

Atypical squamous cells of undetermined significancecannot exclude

HSIL (ASCH). High-grade squamous intraepithelial lesion (HSIL) encompassing:

moderate and severe dysplasia, CIS/CIN II and III.

Squamous cell carcinoma.

Atypical glandular cells including atypical, endocervical adenocarci-noma in situ and adenocarcinoma.

Other.

In the NBCCEDP, a cervical cancerscreening round is initiated by aPap test. The Pap test results arecategorized using the BethesdaSystem.14 This system is a quality assurance tool designed to stan

dardize Pap test reporting andfacilitate outcome monitoring.Abnormal Pap test results that signalthe need for additional diagnostic

testing include low-grade squamous

intraepithelial lesion (LSIL), high-grade squamous intraepitheliallesion (HSIL), squamous cell cancer(SqCa), atypical glandular cells

(AGC), and atypical squamous

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cellscannot exclude HSIL (ASC-H),which was added to the reportingsystem in 2001. If diagnostic workup is required or initiated in theNBCCEDP, documentation of diagnostic tests performed and the finaldiagnosis is expected. Additionally,for women diagnosed with cervi

cal cancer, documentation of thecancers stage at diagnosis, tumorsize, status of treatment, and dateof treatment initiation is required.

The Breast and Cervical CancerMortality Prevention Act of 1990requires programs to take allappropriate measures to ensurethat women with abnormal screening results are provided with

necessary follow-up services. TheNBCCEDP pays for diagnosticservices, including colposcopy andcolposcopy-directed biopsy.

Although the overall rate of screening for cervical cancer in theUnited States has increased, many

subpopulations are not beingadequately screened. More than60% of the women with a diagnosis of cervical carcinoma hadnever been screened or had notbeen screened within the previous5 years of diagnosis.15 In 1999,CDC and an external work group

conducted a careful review of thescientific literature, the cervicalcancer guidelines of professionalorganizations, and NBCCEDP dataon Pap screening outcomes andcollaborated on the developmentand implementation of a new cervicalcancer screening policy. This policyencouraged all NBCCEDP granteesto focus cervical cancer screeningon women who had rarely or never

been screened and to decreaseover-screening of women enrolledin the program.

At the same time, CDC changedthe screening guidelines thatrecommended yearly Pap tests for

all women. The new guidelinesrecommend a Pap test every 3years after a woman has hadthree consecutive normal Pap testresults within a 5-year period. Forwomen who have not had threeconsecutive Pap tests with normalor benign findings within a 5-year

period, annual screening is stillrecommended.

Cervical CancerScreening Participation

Figure 18. Age* Distribution of Women Receiving Pap Tests Through the NBCCEDP, 19912002

65+6% 182910%

606410%

303912%

505929%

404933%

*Age at time of first Pap test.

Figure 18 illustrates the age distribution of women receiving aPap test in the NBCCEDP sincethe onset of the program, andFigure 19 shows the distribution

for 2001 and 2002 only. Morethan half of the women screenedin the program are 4059 yearsof age. Only 22% of clients receiving cervical cancer screening duringthis entire period were underage 40. In the more recent time

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period, these younger age groupsrepresent only 17% of the totalpopulation, which likely reflects theprograms increasing emphasis onthe recruitment of never or rarelyscreened women.

Figure 19. Age* Distribution of Women Receiving Pap Tests Through the NBCCEDP, 20012002

65+ 18296064 2% 7%10%

303910%

505932%

404939%

*Age at time of first Pap test.

Figure 20. Racial/Ethnic Distribution of Women Receiving Pap Tests Through the NBCCEDP, 19912002

Other/Unknown2%

21%Hispanic/Latina

14%

White53%American Indian/Alaska Native

6%


4%

Black/African American

The racial/ethnic distributionof women receiving a Pap test

through the NBCCEDP is shown inFigures 20 and 21. For all yearscombined, slightly less than half(47%) of the women were fromracial/ethnic minority groups.For the most recent time period(20012002), the percentage fromminority groups is slightly morethan half (51%).

Cervical CancerScreening Results

Figure 22 illustrates the age-specificpercentage of screening Paptests with abnormal results duringthe first and subsequent screening rounds for women screenedthrough the NBCCEDP between

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1991 and 2002. For all womenscreened for the first time, thepercentage of abnormal screen-ing results was 2.7% from 1991through 2002. Overall, the per-centage of abnormal Pap testresults decreases with increasingage, and the percentage of women

with abnormal Pap test results ishigher in the first screening round.

Figure 21. Racial/Ethnic Distribution of Women Receiving Pap Tests Through the NBCCEDP, 20012002

Other/Unknown4%

Hispanic/Latina23%

White49%


5%


5%

Black/African American14%

Figure 22. Percentage of Screening Pap Tests That Are Abnormal* Among Women in the NBCCEDP, byAge Group and Screening Round, 19912002

Perc

ent(%)*

12.0 First-round Pap tests Subsequent-round Pap tests

10.0

8.0

6.0

4.0

2.0

0.0

2.7

1.4

9.7

4.1

5.0

2.5

1.0

2.1

1.5 1.41.1

0.8 0.60.9

>Total 1829 3039 4049 5059 6064 _65

Age Group

*Includes the following Pap test results: low-grade squamous intraepithelial lesions (LSIL), high-grade squamous intraepithelial lesions(HSIL), atypical squamous cells of undetermined significancecannot exclude HSIL (ASC-H), atypical glandular cells (AGC), andsquamous cell cancer.

**Most women 65 years of age or older were not served through the NBCCEDP because of eligibility for Medicare Part B coverage.

Figure 23 displays the age-adjusted percentage of abnormalPap test results by racial and ethnicorigin. For both first and subse-quent screening rounds, AmericanIndian/Alaska Native women had

the highest percentage of abnormal Pap test results.

Tables 7.17.3 in the Data Tablessection show the distribution of allcervical cancer screening resultsby age and time period. Tables8.18.3 show the age-adjusted dis-tribution by race/ethnicity for the

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three time periods. There were nosubstantial changes in the percentage of abnormal Pap tests duringthe 12-year time period covered inthis report.

Figure. 23 Age-Adjusted* Percentage of Screening Pap Tests That Are Abnormal** Among Women in theNBCCEDP, by Race/Ethnicity and Screening Round, 19912002

Percent(%)*

3.0

2.5

2.0

1.5

1.0

0.5

0.0

2.1

1.4

2.1

1.4 1.4

2.6

1.8

2.0

1.5

1.2

1.4

2.0

Fi t t

rs -round Pap testsSubsequen -round Pap tests



Race/Ethnicity

*Age-adjusted to the 2000 NBCCEDP population.**Includes the following Pap test results: low-grade squamous intraepithelial lesions (LSIL), high-grade squamous intraepithelial lesions(HSIL), atypical squamous cells of undetermined significancecannot exclude HSIL (ASC-H), atypical glandular cells (AGC), andsquamous cell cancer.

Figure 24. Rates of Biopsy-Confirmed Cervical Intraepithelial Neoplasia (CIN) II or Worse* Among Womenin the NBCCEDP, by Age Group and Screening Round, 19912002

30.0 Fi t ts

1.3 1.1

rs -round Pap testsSubsequent-round Pap tes

25.0

20.0

15.0

10.0

5.0

0.0

26.7

10.8

RatePer1,000PapTests

14.1

6.3

8.1

2.6

6.2

2.63.9

1.6

3.42.7

Total 1829 3039 4049 5059 6064

Age Group

_>65

*CIN II or worse includes CIN II, CIN III, carcinoma in situ, and invasive cervical cancer.

Cervical Precancer andCancer Detection

Figure 24 shows age-specificrates of biopsy-confirmed cervical intraepithelial neoplasia (CIN)II or worse (includes CIN II, CIN

III, CIS, and invasive cancer) byscreening round per 1,000 Paptests in the NBCCEDP. The ratesof CIN II or worse decrease withparticipants increasing age inboth first and subsequent screeningrounds. The age-adjusted rates by

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race and ethnicity are illustrated inFigure 25. Overall, and adjustedfor age, there were 6.1 cases ofCIN II or worse per 1,000 Paptests. In the first round of screening,white women had the highest age-adjusted rate (7.1 per 1,000 Pap

tests), followed by Hispanic/Latinawomen (5.7 per 1,000 Pap tests).Regardless of age, race, or ethnic-ity, the detection rates were lowerin subsequent rounds.

Tables 9.19.3 and Tables10.110.3 show the rates ofbiopsy-confirmed CIN and invasivecervical cancer among womenin the NBCCEDP. There were no

substantial changes in the precan-cerous and cancer detection ratesbetween 1991 and 2002.

Figure 25. Age-Adjusted* Rates of Biopsy-Confirmed Cervical Intraepithelial Neoplasia (CIN) II or Worse**Among Women in the NBCCEDP, by Race/Ethnicity and Screening Round, 19912002

RatePer1,000

PapTests

8.0 First-round Pap tests Subsequent-round Pap tests7.0

6.0

5.0

4.0

3.0

2.0

1.0

0.0Total* White Black/African Asian/Native American Hispanic/Latina

6.1

2.6

7.1

3.0

4.4 4.6

1.8

5.3

2.5 2.6

2.1

5.7

American Hawaiian/Other Indian/AlaskaPacific Islander Native

Race/Ethnicity

*Age-adjusted to the 2000 NBCCEDP population.**CIN II or worse includes CIN II, CIN III, carcinoma in situ, and invasive cervical cancer.

Positive PredictiveValue of AbnormalPap Tests

The diagnostic value of a proce-dure is often defined by its positive

predictive value, or the measure(%) of times a positive test resultleads to diagnosis of disease.Here, the positive predictive value(PPV) of an abnormal Pap test isdefined as the proportion of Paptest results of LSIL, ASC-H, HSIL,

AGC, or SqCa combined thatresult in a final diagnosis of CIN IIor worse. Figure 26 illustrates theage-specific PPVs of abnormal Paptests by screening round. Overall,in the first round the PPV is 25.4%,whereas subsequent rounds havea lower PPV of 14.1%. The PPVsare highest for women in their 30s.The variation by racial and ethnicgroup is shown in Figure 27. The

PPV is highest in white womenin the first round (29.0%) and inAsian/Native Hawaiian/OtherPacific Islanders in the subsequentrounds (16.3%).

Tables 11.111.3 in the DataTablessection of this report showthese results by time period.

Stage of InvasiveCervical Cancer atTime of Diagnosis

Screening for cervical cancerallows for early detection whenthe disease is at its earliest and

most treatable stage. Figure 28illustrates the detection of invasivecervical cancer for women lessthan 50 years of age or 50 yearsand older in the NBCCEDP. A totalof 832 women were diagnosedwith invasive cervical cancer from1991 through 2002 and 52.8% ofthese cases were identified as locadisease. Regardless of age, mostcases were detected in an early

stage. However, women under 50years of age were more likely thanwomen over 50 to be diagnosedwith local disease.

Tables 12.112.3 in the DataTablessection of this report showall cervical cancer staging resultsby age and time period.

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Figure 26. Positive Predictive Value (PPV)* of Abnormal Pap Test Results** Among Women in the NBCCEDP,by Age Group and Screening Round, 19912002

l Fi t ts

0

5

10

15

20

25

30

35

25.4

14.1

23.0

29.7

17.2

20.4

27.825.8

12.8

24.8

11.1

11.6

25.6

11.9


rs -round Pap testsSubsequent-round Pap tes

_Total 1829 3039 4049 5059 6064 >65

Age Group

*The PPV was calculated by dividing the number of abnormal Pap test results** leading to a biopsy-confirmed high-grade lesion

(CIN II or worse) by the total number of abnormal Pap test results.**Includes the following Pap test results: LSIL, ASC-H, HSIL, AGC, and squamous cell cancer. Abbreviations: CIN=cervical intraepithelial neoplasia; HSIL=high-grade squamous intraepithelial lesion; LSIL=low-grade squamousintraepithelial lesion; AGC=atypical glandular cells; ASC-H=atypical squamous cells of undetermined significancecannot exclude HSIL.

Figure 27. Positive Predictive Value (PPV)* of Abnormal Pap Test Results** Among Women in the NBCCEDP,by Race/Ethnicity and Screening Round, 19912002

0.0

5.0

10.0

15.0

20.0

25.0

30.0

35.0

29.0

15.9

21.7

10.3

16.3

26.7

14.8

12.7

23.5

12.7

l Fi ts


rst-round Pap testsSubsequent-round Pap tes

White Black/African Asian/Native American Hispanic/LatinaAmerican Hawaiian/Other Indian/Alaska


Race/Ethnicity

*The PPV was calculated by dividing the number of abnormal Pap test results** leading to a biopsy-confirmed high-grade lesion(CIN II or worse) by the total number of abnormal Pap test results.**Includes the following Pap test results: LSIL, ASC-H, HSIL, AGC, and squamous cell cancer. Abbreviations: CIN=cervical intraepithelial neoplasia; HSIL=high-grade squamous intraepithelial lesion; LSIL=low-grade squamousintraepithelial lesion; AGC=atypical glandular cells; ASC-H=atypical squamous cells of undetermined significancecannot exclude HSIL.

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Figure 28. Distribution (%)* of Cancer Stage** at Time Invasive Cervical Cancer Was Diagnosed in WomenScreened Through the NBCCEDP, by Age Group, 19912002

29.7

12.8

0.0

10.0

20.0

30.0

40.0

50.0

60.0

70.0

52.8

35.5

5.6 6.1

60.8

45.9

29.6

5.73.9

8.15.6

40.5

>_50

(%)*

t *** i l st **** *****

Percent

Local s age

Reg ona age

Distant stageUnknown stage

Total _50

Age Group

*Totals may not add to 100% due to rounding.

**Staging information in the NBCCEDP data may not be consistent with that from cancer registries due to variation in type of information reported by individual programs.***Includes the International Federation of Gynecology and Obstetrics (FIGO) Stage I and the Surveillance, Epidemiology, and End Results (SEER) local summary stage.****Includes FIGO/American Joint Committee on Cancer (AJCC) Stage II and III and SEER regional summary stage.*****Includes FIGO/AJCC Stage IV and SEER distant summary stage.

FutureDirections

In cooperation with many localand national partners, theNBCCEDP continues efforts toexpand screening services andimprove program efficiency andeffectiveness. Currently, there areseveral special projects adminis-tered by CDCs Division of CancerPrevention and Control (DCPC)that are designed to improve ourunderstanding of effective infra-

structure choices, costs, and bestpractices. With cooperation fromour funded programs, the results ofthese special studies and analyseswill enhance the success of ourprogram. The following sectionhighlights some of the important projects underway.

Sharing NBCCEDPPerformance Data withthe General Public

In response to a congressionalinitiative to share NBCCEDPperformance data with the gen-eral public, CDC is developinga Web-based report accessiblethrough the CDC public Web sitethat will provide a current summary of national and program-specific screening and diagnostic servicesand outcomes.

The MDE ValidationProject

CDC regularly reviews the MDEdata for program monitoringpurposes and also conductsanalyses of the national data forpublication in appropriate reportsand professional journals. A list ofprevious publications is providedinAppendix II. To better assess

the quality of these data, CDChas initiated a national evaluationof the MDE data. To evaluate thequality of the national database,

breast and cervical cancer screen-ing, diagnostic, and final diagnosisMDE data from a sample ofNBCCEDP grantees will be compared with data in the patients medical records.

Estimates of thePercentage of theEligible U.S. PopulationScreened Through the

NBCCEDPEfforts are under way to estimatethe total number of women in theUnited States who are eligiblefor the NBCCEDP as well as thepercentage of age-appropriatewomen currently being screenedthrough the program. The estimateswill be based on the MDEs andthe Annual Social and Economic

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Supplement of the U.S. CensusBureaus Current Population Survey.This information will be used toinform the programs estimatesof resources needed to expandservices, and may also be usefulin ident

Documents

National Breast and Cervical Cancer Early Detection Program (a National Report)