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Hepatitis B RulesThe regulations for reporting

adverse pregnancy outcomes will be

modified in 1999 to require the

identification of infants who were

prenatally exposed to hepatitis B or

who were diagnosed with hepatitis B

infection during the newborn

hospitalization. At its December 1998

meeting, the State Board of Health

approved language for this rule change

so that these infants can receive needed

vaccines immediately. The Illinois

Department of Public Health will

proceed to promulgate the change to

APOR’s administrative rules (77 Il.

Adm. Code 840.210). The rule

making process will take three to four

months. Until the change takes effect,

hospitals are asked to report infants

diagnosed with a prenatal exposure to

hepatitis B (ICD-9-CM code V01.7)

and those with a hepatitis B infection

(ICD-9-CM code 774.4) in the same

manner as they do other reportable

conditions affecting newborn infants.

Information about the proposed rule

may be obtained by contacting Trish

Egler, APORS manager, at 217-785-

7133.

Winter 1999

First Step Toward Services for High-risk Infants

The Adverse Pregnancy Outcomes Reporting System (APORS) plays animportant role in making sure high-risk infants receive the services needed topromote optimal growth and development. When hospitals complete APORSreports for infants born with birth defects or other adverse consequences, theyare taking the first step to assure that these infants and their parents receivefollow-up services. Services must be provided as quickly as possible (1) tominimize disability by identifying possible conditions requiring furtherevaluations, diagnosis and treatment, and (2) to assure home environments aresafe and nurturing.

Hospitals complete the APORS’s Infant Discharge Record within sevendays of a newborn baby’s discharge from the hospital. In addition to sending thereport to the Illinois Department of Public Health (IDPH), a copy is sent to thelocal health department responsible for providing high-risk infant follow-upservices. That action initiates a home visit to the family by a local healthdepartment nurse within seven days of notification.

Public health nurses can provideservices to high-risk infants and theirfamilies for up to two years. A nursecontacts the parents as soon as possible toarrange the first home visit. At that visit,the nurse gives the baby a simple physicalexamination and a Denver developmentalscreening, evaluates the home for infantsafety, provides health and parenteducation, reinforces hospital dischargetreatment instructions and makes referralsto other public health and community social

services that can assist the family. If the parents agree to receive additionalfollow-up services, the local health nurse will visit the infant and family at leastfive additional times during the next two years – when the infant is 2, 6, 12, 18and 24 months old. At each visit, the infant’s physical, developmental, psycho-social, cognitive and emotional growth is assessed so that any need for furtherservices can be identified quickly.

Based on need, some families may be referred to special programs. Some

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may be eligible for services such as the Special Supplemental Nutritional Program for Women, Infants and Children (WIC),early intervention programs for children birth to 3 years who have developmental delays, family planning and geneticcounseling. During all of the contacts with parents of high-risk children, the local health department nurses offer support,education and assistance so that parents are better able to care for their children.

Each year approximately 15,000 infants are reported to the Adverse Pregnancy Outcomes Reporting System by Illinoishospitals. A very large percentage of those infants’ families take advantage of the follow-up services provided by local healthdepartments. The high-risk infant follow-up program is administered by the Illinois Department of Human Services. Thepartnership of the state departments, local health departments and hospitals benefits Illinois families.

Jessie’s Story

Jessie is an APORS baby. Shewas born in a central Illinois hospitaltwo weeks early. Her parents, bothin their early 20s, never expected aproblem. Since they already had ahealthy 4-year-old son. DuringJessie’s newborn hospital stay, thestaff suspected that she might havea birth defect. However, it was notuntil after Jessie’s parents took herhome that they learned she hadDown syndrome.

Within two days after thecounty health department wasnotified by the hospital, Jessie andher parents started receivingservices. Mary Smith, a registerednurse, immediately made a visit toJessie’s home. Both has manyquestions and concerns. While theyhad occasionally seen a child withDown syndrome, neither knew how itcould occur and what it meant tohave a baby with a birth defect. First, Mary reassured Jessie’smother and explained that neitherparent was at fault. She went on toexplain that, besides Downsyndrome, Jessie had a heart defectthat would require surgery. Marygave Jessie a physical examinationand a developmental screening. Itwas reassuring that Jessie wasfeeding well and did not have anyimmediate health concerns.

During the initial visit, Mary

learned that both parents wereemployed, and Jessie’s mom hadhealth insurance. However, thefamily was concerned about itsportion of costs for the needed heartsurgery. Mary referred the family toSocial Security for financial aid, butthe family was ineligible for benefits. Then, Mary referred them to theUniversity of Illinois’ Division ofSpecialized Care for Children(DSCC). Jessie was accepted into aDSCC program that could providesome help with Jessie’s medicalcosts and associated expenses.

Jessie’s parents also neededassistance in finding a primary carephysician with experience in caringfor a child with Down syndrome

since not every doctor has suchexpertise. Mary identified an areaphysician who was knowledgeable,and the family was referred to thatperson.

Mary also linked the family with theChild and Family Connection, anearly intervention agency that servesfamilies of children, aged 0 to 3. The Child and Family Connectioninvolved Mary in developing a careplan with Jessie’s parents. Thisplanning process asked the parentsto assess Jessie’s and their strengthsand needs and to set goals. Jessie’sparents wanted to learn more aboutDown syndrome and how they couldmeet their baby’s needs. Maryworked with the parents to educatethem on developmental milestonesand what they could do to helpJessie achieve them. For example,a baby with Down syndrome oftenhas weak muscle tone and suffersdelays in rolling over. Jessie’sparents were taught to do exerciseswith her to strengthen her muscles. For additional information, thecounty health department purchaseda book on Down syndrome forJessie’s parents.

Jessie’s parents were not theonly ones who needed to beeducated about Down syndrome. Arelatively rare occurrence, theannual number of babies born in

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Illinois with Down syndrome hasaveraged 163 since 1989. Mary,who had never provided services toa baby like Jessie, discovered therewas much she needed to learn. Sheresearched the syndrome andlearned what nursing physicalassessments should be done. Forexample, Down babies may haveproblems such as hearing loss orthyroid dysfunction. Mary used thisinformation as she assessed Jessieduring visits. In addition, Maryworked with Jessie’s parents so thatthey understood the importance ofhearing examinations and of keepingthe doctor aware of Jessie’sdevelopment.

Within a few months, Jessiebegan having problems while

feeding. She began sweatingprofusely and became cyanotic. Jessie had been seeing a heartspecialist in Peoria, whorecommended surgery. Theoperation was successful, but shewas hospitalized for three weeksafterward due to respiratorycomplications. DSCC assisted thefamily by paying for theirtransportation and lodging whileJessie was hospitalized. Oncereleased, Jessie recovered quickly,had no feeding problems and gainedweight.

Jessie is now 9 months old. The family is enrolled in the countyhealth department’s WIC program. Mary continues to provide assistanceto the family. Since Jessie was

born, Mary has met with the familyeight times and spoken frequentlywith them between visits. Mary willcontinue to monitor Jessie’sprogress, to reinforce the child’smedical treatment, to provide healthinformation and parent education,and to make necessary referrals. Every child with Down syndrome isunique with different potential forgrowth and development. Earlyactions taken by the family canpositively influence how the childdevelops. It is good to know thathospitals can bring in local healthdepartments to assist and supportfamilies for better outcomes forAPORS babies.

Illinois Counties With Need for Cancer Screening

Purpose

The Illinois State Cancer Registry is the onlypopulation based source for cancer incidence data in Illinois.This study originally was conducted by research staff of theDivision of Epidemiologic Studies in February of 1998. Theassessment was a direct response to the Illinois breast andCervical Cancer Program. Later the purpose of the needsassessment was to provide local providers with informationregarding the degree of need in a particular county forbreast and cervical cancer screening services.

Method

Each Illinois county was ranked on six indicators: cervical cancer mortality: five-year average age-adjustedrates (AAR) for 1992-1996, Illinois females of all racesbreast cancer mortality: five-year average age-adjustedrates (AAR) for 1992-1996, Illinois females of all races poverty level: percentage of women older than age 40 whoare under the 200 percent poverty level breast cancer in situ incidence: five-year average age-adjusted rates (AAR) for 1990-1994, Illinois females of allracesinvasive breast cancer incidence: five-year average age-

adjusted rates (AAR) for 1990-1994, for Illinois females ofall racescervical cancer incidence: five-year average age-adjustedrates (AAR) for 1990-1994, Illinois females of all races

The rates for each indicator were grouped into sevencategories with one seventh of the counties falling into each.The counties with the highest incidence and mortality rateswere given the highest value of seven, with the exception ofbreast cancer in situ, where the order was reversed andcounties with the highest incidence and mortality ratesreceived the lowest value of one. A county given the valueof one is considered to have the least need for service andtherefore the lowest incidence and mortality rates, while acounty with the value of seven has the greatest need forservice on that particular indicator. Finally, all the values foreach of the six indicators were added (shown in Table 1)and then ranked in descending order. The counties with thehighest rank has the greatest need for breast and cervicalcancer screening.

ResultsTable 1 shows the descending scores by county. The

scores ranged from 14 to 38 (possible 7 to 42). The countiesin italics are currently served by the Illinois Breast and

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Cervical Cancer Program (IBCCP)

Table 1 Illinois Counties Ranked by Need of Breast and Cervical Screening ServicesCounties not served are in bold type. Counties served are italicized.

County Rank

Mason 38Greene 36Fulton 36Gallatin 36Cumberland 33Clay 33Cass 33Williamson 32Marion 32Schuyler 32Lawrence 32Perry 31Massac 30Cook 30Christian 29Franklin 29Johnson 29White 29Hamilton 29Effingham 29Pike 29

County RankTazewell 28St. Clair 28Peoria 28Pulaski 27Morgan 27Adams 27Carroll 27Rock Island 27Whiteside 26Jackson 26De Kalb 26McDonough 26Iroquois 26Coles 26LaSalle 26Vermilion 26Kankakee 26Brown 26Logan 26Crawford 26Montgomery 25

County RankCalhoun 25Randolph 25Edgar 25Knox 25Winnebago 25Kane 25De Witt 25Edwards 24Jefferson 24Sangamon 24McHenry 24Bureau 24Macoupin 24Stephenson 24Menard 24Saline 24Stark 24Putnam 23Jasper 23Washington 23Richland 23

County RankWarren 23Hardin 23Livingston 23Wayne 23Shelby 23Douglas 22Clark 22Alexander 22Jersey 22McLean 22Champaign 22Will 22Du Page 21Madison 21Wabash 21Clinton 21Union 21Fayette 20Macon 20Henderson 20Boone 20

County RankLee 20Ogle 20Jo Daviess 20Woodford 19Pope 19Hancock 19Lake 19Kendall 18Monroe 18Henry 18Bond 18Scott 18Marshall 16Ford 16Mercer 16Grundy 15Moultrie 14Piatt 14

As shown in Table 2, the largest percentage of countiesnot served by the IBCCP falls into the second lowest quintilegroup, while the smallest percentage (16 percent) andnumber (nine) of counties served fall into the highest andsecond highest quintile group. The counties with the highestscores have the greatest need for breast and cervical cancerscreening services. Further, the counties in the three topquintiles also have the greatest unmet need for screening.

Table 2 Illinois County Quintilesand the Number and Percentage ofCounties not served by IBCCP

ScreeningNeed

Counties notserved by IBCCPNo. %

38 to 29 10 1829 to 26 9 1626 to 23 10 1823 to 21 14 2621 to 14 13 24

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Illinois State Cancer Registry

Continuing Education

• In September 1998, ISCR provided technical

support for the North American Association of

Central Cancer Registries’ program, Data

Confidentiality: from Rumor to Court Order.

• In October 1998, ISCR presented a two-hour,

land-based conference on staging, comparing

the three staging schemes required by ISCR and

answering questions submitted by participants.

If you are interested in viewing the video of either of

these presentations contact Teri Gorsek at 217-557-

0184.

Data Acquisition Manual

The revised copy of the ISCR Data Acquisition

Manual has been distributed to all reporting facilities,

with an effective date of January 1, 1999, for those

facilities not currently submitting in the NAACCR 6.0

data exchange format. The most important changes

in the new manual are the addition of both clinical

and pathological Tumor, Node, Metastasis (TNM)

staging, changes to the EOD staging scheme, addition

of treatment information variables and coding of site

and morphology by non-registry facilities.

In October 1998, the OccupationalDisease Registry began collaboratingwith the federal Bureau of LaborStatistics (BLS) on an occupationalsafety and health survey for Illinois.BLS has conducted this survey since1992, but could not provide data forIllinois specific companies. This surveywill identify the types of job relatedinjuries and illnesses that befellindividuals employed by Illinoiscompanies. Companies are required to

provide injury and occupational illnessdata to the BLS. Survey results for1998 will be available at the end of1999.

De f in i t i ons o f non fa ta loccupational injuries and illnesses usedin the annual survey are the same asthose used by employers to keep logsof incidents throughout the survey(calendar) year. The survey identifiesthe nature of injury or illness, the part of

the body affected, the source of theinjury or illness, and the event orexposure. The survey also identifies theoccupation of the affected employee.

In addition to injury and illnesscounts, the survey data will be used tocalculate incidence rates. Incidencerates permit comparison amongindustries and establishments ofvarying sizes, thus allowing a commonstatistical base across industries.

Occupational Safety and Health Survey

Most companies with 10 or moreemployees are subject to surveyparticipation. In addition, somecompanies with less than 10 employeeswill be required to participate in order toget a good sampling of both large andsmall companies. To insurecomparability and reliability, BLSdesigns and identifies the surveysample for each state.

Each employer completes a singlereport form for national and stateestimates of occupational injuries andillnesses. This procedure insuresmaximum comparability of estimates.Summary information on the number ofinjuries and illnesses is copied directlyfrom employer logs and entered ontothe form. State agency and BLSpersonnel edit the summary data andcode case characteristics.. Initialestimates of data are issued. Theestimating procedure generatesoccupational injury and illness

estimates for approximately 900Standard Industrial Classificationcodes. Each year, BLS will publish acomprehensive bulletin coveringnational results, while Illinois willprepare a report covering state results.

National and state policy makerscan use the survey results as anindicator of occupational safety andhealth problems. Both labor andmanagement use the estimates in

evaluating safety programs. Otherusers include insurance carriersinvolved in workers' compensation,industrial hygienists, manufacturers ofsafety equipment, researchers andothers concerned with job safety andhealth.

Many factors can influence countsand rates of injuries and illnesses in agiven year. These include not only theyear's injury and illness experience,and the employer's understanding ofwork related injuries, but also the levelof economic activity in a particularindustry group.

The REGISTRY NEWSLETTER is published by the Division of Epidemiologic Studies, IllinoisDepartment of Public Health, 605 W. Jefferson St., Springfield, IL 62762, 217-785-1873, TTY (hearingimpaired use only ) 800-547-0466.

Jim Edgar, GovernorJohn R. Lumpkin, MD, Director of Public HealthHolly L. Howe, PhD, Chief, Division of Epidemiologic StudiesTrish Egler, Adverse Pregnancy Outcomes Reporting SystemJoellyn Hotes, Management Operations AnalystJan Snodgrass, Illinois State Cancer RegistryRoy Maxfield, Occupational Disease Registry

Printed by Authority of the State of IllinoisP.O. #549143 2M 1/99

Illinois Department of Public HealthDivision of Epidemiologic Studies605 W. Jefferson St.Springfield, IL 62761