Evaluation and Implementation of State Comprehensive Cancer Control Plans: Evolving Lessons

APHA 2005 Annual MeetingEpidemiology Section

Session 3187.012:30–2:00 PM

Monday, December 12, 2005

Assessing cancer burden:Estimating and utilizing prevalence

Presented by:Judith B. Klotz, DrPH

UMDNJ-School of Public Health

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Co-authors of this presentation include:

Stanley H. Weiss, MDXiaoling Niu, MSJung Y. Kim, MPHDaniel M. Rosenblum, PhD

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Context: Capacity and Needs Assessment at County Level Focus on seven NJ-CCCP priority cancers

Breast, Cervical, Colorectal, Lung, Melanoma, Oral/Oropharyngeal, Prostate

Need for estimates of burden of cancer in the population

Prevalence = number of people living with a disease at a point in time

Cancer prevalence estimates are useful supplements to incidence and mortality statistics, and help determine the level of cancer control efforts needed

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Uses of Prevalence Data IncludeAssessing current burden of diseasePredicting future burden of diseasePlanning of health servicesAllocation of medical resourcesPlanning and administering health care

facilitiesGuiding health care research programs

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A Limitation of Incidence and Mortality Statistics

Adjusted rates do not reflect actual burden of disease or number of persons affected

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Institute of Medicine (IOM)2006 Report on Cancer Survivors

Over 10,000,000 prevalent cases today in U.S.

Dearth of coordinated clinical and support follow-up services for patients and their families

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IOM Report: Follow up needs for patients and families Rehabilitation and quality-of-life issues Psychological stresses

e.g. potential for recurrence Acute or chronic pain or other side effects from

cancer treatment Risks of additional cancer from radiation/

chemotherapy Needs for continuing treatment and/or screening Insurance issues

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Prevalence (count): Number of people living with the disease at a point in time

Prevalence rate: Number of prevalent casesdivided by the total population

Types of Prevalence

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“Complete Prevalence” Usually preferred for cancer Includes all survivors, regardless of years

since diagnosisRationale: long-term needs of patients and

families for medical and psychosocial services “Limited Duration Prevalence”

Includes those who were diagnosed within specified number of years (e.g., 2, 5, 10, 20)

So does NOT include those who survive after the number of years at which follow-up is truncated

Types of Prevalence, cont.

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Typical Sources of Prevalence DataPopulation SurveysEstimation from combination of incidence

and survival dataCannot simply combine mortality and

incidence data in a particular year because they pertain to different, specific persons:Most people who die in a particular year were

diagnosed in an earlier year

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Current Availability ofTotal Prevalence Estimates Conducted by NCI for U.S. based on longest cancer

registries and complex modeling Connecticut Tumor Registry: since 1935 New models developed in Italy and adapted by NCI

New SEER*Stat program Newly available as of August 2005 (after C/NA was

completed) Provides counting method for limited duration prevalence Years since diagnosis depend on inception of state cancer

registry New utility, “COMPREV” estimates complete prevalence

from limited-duration prevalence

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Capacity and Needs AssessmentPrevalence Estimates for CountiesBasic method for C/NA, 2003–2004 This method was reviewed and approved by the

Evaluation Committee of Governor’s Task Force Use the ratio of prevalence rate to crude incidence

rate from national (NCI SEER) data, By specific cancer By gender

Apply this ratio to county-specific crude incidence rate Wide variability among counties expected due to

variations in population size and demographics

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Capacity and Needs AssessmentPrevalence Estimates for CountiesSource Dataa. Total populations for each county (by gender),

from the 2000 Censusb. Incidence counts for 1996–2000 for each county,

as provided by the NJ State Cancer Registry

These were used to calculate crude incidence rate, separately for each gender:

Crude incidence rate = x 100,000

Counts of new casesTotal population

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Simplifying Assumptions County survival rates assumed to resemble

national survival rates by gender, for each cancer, whereas these may in fact vary

Migration in and out of counties assumed not to affect prevalence counts, whereas migration after diagnosis could alter the true number of affected people still living in a given county

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Simplifying Assumptions, cont.Racial and ethnic distributions assumed

not to alter county survival rates, whereas these demographic differences could affect numbers of survivors in any county

Crude incidence is approximated by 1996–2000 data, whereas current incidence may now differ

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Prevalence to Incidence Ratios*Of the prevalence to incidence ratios for

the 7 NJ-CCCP priority cancers,Lowest ratio: Lung cancer (males) = 1.4Highest ratio: Cervical cancer = 17.0

Interpretation: There are about 17 times as many living women who have been diagnosed with cervical cancer as have been newly diagnosed during one year.

* Ratio of national estimated complete prevalence rate to national incidence rate

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Calculated from NCI Data: Prevalence/Crude Incidence Ratios

Ratios of Prevalence to Crude IncidenceCancer Site Males FemalesAll cancer combined 5.6 8.8Breast -- 11.4Cervical -- 17.0Colorectal 5.4 7.8Lung and bronchus 1.4 2.2Melanoma of the skin 10.2 16.3Oral/oropharyngeal 6.6 8.7Prostate 7.3 --

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SEER*Stat Prevalence Estimates for NJ and its Counties Calculated a 20-year duration limited prevalence

NJ State Cancer Registry began 1979, so that there is data for more than 20 years

Data currently available through 2003 Used January 1, 1999 as the sample point in time These prevalence statistics have not yet been

published by NJ Dept of Health and Senior Services

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SEER*Stat Prevalence Estimates for NJ and its Counties For long-survival cancers,

SEER*Stat count estimates were markedly lower than C/NA complete prevalence estimates e.g. Limited/complete ratio for cervical cancer

State: 0.64Counties: 0.56–0.84

Note: It is to be expected that estimates for counties will vary markedly from each other

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SEER*Stat Prevalence Estimates for NJ and its CountiesFor short-survival cancers,

SEER*Stat limited duration estimates were in closer agreement with C/NA complete prevalence estimates, both statewide and for many counties: e.g. Limited/complete ratio for lung cancer

State: 1.1Counties: 0.93–1.3

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Ratios of Estimate Counts for SEER*Stat Limited Prevalence toC/NA Complete Prevalence

CancerSite Gender Ratio for NJ

statewideRange of ratios

in countiesLung Male 1.1 0.93 – 1.3

Female 0.84 0.73 – 1.1Colorectal Male 1.2 1.1 – 1.4

Female 0.87 0.75 – 1.0Oral Male 0.79 0.63 – 1.0

Female 0.71 0.54 – 0.85Melanoma Male 0.89 0.63 – 1.2

Female 0.73 0.59 – 0.9Breast Female 0.89 0.77 – 0.95Cervical Female 0.64 0.56 – 0.84Prostate Male 0.9 0.77 – 0.97Results discussed above are highlighted in yellow

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Comparison with SEER*Stat Estimates for NJ Counties, cont. Gender differences in prevalent case estimates

for colorectal cancer were shown by C/NA method but not SEER*Stat perhaps related to longer lifespan of women

Limitations of prevalence estimates currently available from State Cancer Registries using SEER*Stat Duration depends on year of inception of Registry For 15 states: less than 10 years available

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Comparisons of Estimated Counts– Some Examples

CancerSite Location

SEER*Stat Limited

Duration Prevalence

C/NA Complete

Prevalence

Cervical New Jersey 5,337 8,377Passaic County 331 560Hudson County 469 702

Oral* New Jersey 4,949 6,550Ocean County 353 545Mercer County 217 331

* Male + female combined

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Comparison with SEER*Stat Estimates for NJ Counties, cont.Future analyses:

We anticipate using SEER’s new COMPREV to estimate Complete prevalence from the Limited-Duration prevalence, and then to compare these results to the C/NA method used in 2003–2004

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Use of County Prevalence Estimates to dateCounty cancer control planners and county

cancer coalitions have found prevalence estimates useful for:

Estimation of relative burden of disease among county populations of different cancers

Recommendations for priority actions

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County Use of Prevalence Data in Assessing Needs for Cancer Control

An Example: "The four most prevalent NJ-CCCP priority

cancers in Somerset County are breast, prostate, colorectal cancer, and melanoma.... [and] the goals and strategies in the NJ-CCCP that are of highest priority for Somerset County are outlined below for each of these four cancers.”

Source: Somerset County, Capacity and Needs Assessment Executive Summary 2003

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Acknowledgments and WebsitesWe acknowledge:

Cancer Epidemiology Services, New Jersey Department of Health and Senior Services: Lisa Roché, PhD Betsy Kohler, MS, CTR

County Evaluators of the NJ-CCCP Capacity and Needs Assessment

NCI SEER*Stat website:http://srab.cancer.gov/comprev/

Evaluation Committee website:http://www.umdnj.edu/evalcweb/