Vol. 12 No. 2 25

NSW PublicHealth Bulletin

CONTENTS

Volume 12, Number 2February 2001

ISSN 1034 7674State Health Publication PH 010007www.health.nsw.gov.au/public-health/phb/phb.html

continued on page 26

GUEST EDITORIAL

Bruce ArmstrongDirector, Cancer Research and RegistriesNSW Cancer Council

The growth of information technology in modern health serviceinfrastructure creates opportunities for more accurate, timely,efficient and useful cancer registries. The followingdevelopments are key:

• computerised patient administration and patient caresystems;

• coverage of ambulatory as well as in-patient care;• electronic reporting of pathology and other test results;• health data ‘warehouses’ that store information from these

and other systems (for example, death registrations);• the World Wide Web.

The cancer registry of the future will be:

• more accurate, thanks to computer-assisted coding, rangeand logic checks applied to input data at source, and rapidelectronic feedback to the source for correction ofinconsistencies or errors found in case resolution;

• more timely, since most of the input data will be deriveddirectly from computerised information used for patientadministration and care, which will be compiled in real ornear real time;

• more efficient, since, ultimately, all or nearly all the data theregistry needs will be extractable from a continually updatedhealth data warehouse and will require little if any furtherprocessing before it can be analysed and reported;

• more useful, first because of richer population-based datacollections from computerised patient-management systemsand, second, because of the rapidity and richness of data andinformation dissemination through the World Wide Web.

THE FUTURE IS NOW:NEW AND BETTER CANCER

INFORMATION IN NSW 25 Guest editorial: The future isnow—new and better cancerinformation in NSW

26 Status report on redevelopingthe NSW Central CancerRegistry

28 Towards a clinical cancerinformation system

33 Better information forradiation oncology

36 Estimating a woman’s risk ofbreast cancer: the effects ofage and family history

40 Cancer in NSW : incidenceand mortality 1997

43 FactSheet : Creutzfeld-Jakobdisease

44 What’s new on the CIAP Website

44 Communicable diseases:February

26Vol. 12 No. 226

Imagine a population-based cancer registry fedcontinually with individually linked data fromwarehouses contributed to by all, or nearly all, notifiers(such as hospitals and pathology laboratories). Thedata include information on in-patient and ambulatorysurgical, chemical, biological and radiation treatment.The few notifiers who do not use a data warehousenotify through a secure Web site or completion of anotification form through their Web browser.Sophisticated case resolution software identifies newincident cases in incoming data and there is little needfor human intervention. All data are coded at sourceand the registry’s focus is quality assurance.

A new data file is released quarterly and is completeto the end of a period six months before its release.The file is immediately accessible through an easilyused, analytical ‘front end’ on the World Wide Web.

Privacy is protected by software ensuring thatdisaggregation to the point of potential identifiabilitydoes not occur. Release of leading indicators of changein incidence, mortality and survival follows shortly, asdoes information comparing the care delivered byindividual health services with best-practice care. Anemail alert is sent to key public health and cancer caredecision-makers with a link to the new information.

Staff members spend most of their time in developingnew cancer registry information products and in value-added analysis and research using cancer registry data.

This is all possible now.

This issue of the Bulletin, the second in a five-part serieson cancer, contains articles and reports describing hownew and better cancer information systems are beingapplied in New South Wales.

Elizabeth TraceyManager, Cancer RegistersNSW Cancer Council

Since 1972, public health legislation in NSW requiresthat all new cases of cancer are notified. Since 1986, theNSW Central Cancer Registry (CCR) has been based atthe NSW Cancer Council and has reported on the number,rates, types and distribution of cancer cases and deaths inNSW. This information has been vital for planning cancerservices, and monitoring the health of the NSWpopulation.

Currently, the NSW Public Health Act 1991 requires thathospitals and pathology laboratories notify the NSWCentral Cancer Registry of people who are treated forcancer, or who have had tests that have diagnosed cancer.These notifications contain information about thepatients, the type of cancer, date of diagnosis and treatmentgiven, and are currently received by the CCR either inelectronic or paper form. A number of notifications cantherefore be received for the same case of cancer fromdifferent sources, and must be matched and reconciledthrough the process of registration. Notification from avariety of sources ensures better capture of data on asmany cancer cases as possible; and, through the processof checking and registration, better quality data on eachcase of cancer registered.

This article describes the progress of initiatives to improvethe operational efficiency of the registration process and

STATUS REPORT ON REDEVELOPING THENSW CENTRAL CANCER REGISTRY

the quality of the data received, processed, and madeavailable for use by, the NSW Central Cancer Registry.These initiatives include:

• automated methods to validate and check data entryin hospital patient administration systems;

• improving mechanisms to receive and process datathrough electronic notification, and eventuallythrough the Health Information Exchange (HIE);

• increasing the proportion of notifications received inelectronic form;

• improving the processing and storage of papernotifications through the introduction of a workflowmanagement system;

• eliminating the backlog of unprocessednotifications;

• developing a new main database to manage the data;• making the data available in an easily accessible

format.

OVERVIEW OF THE CCR REDEVELOPMENTThe redevelopment project covers all aspects ofnotifying, receiving, processing, editing, extracting,analysing and reporting population-based cancer datain NSW and the ACT. The project is funded by the NSWGovernment and is administered by the NSWDepartment of Health. It aims to achieve:

• solutions that are consistent with the Department ofHealth Information, Management and Technology

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Strategic Plan and the NSW Central Cancer RegistryBusiness Case;1

• the removal of the backlog of notifications andassurance that reporting requirements take place withinone year of notification;

• increased timeliness and quality of data;• improved reporting of data.

INITIATIVES TO IMPROVE DATA QUALITYRedevelopment initiatives in the following strategic areasshould result in a major improvement in the quality ofdata and information produced by the CCR:

Patient Administration SystemCurrently, 40 per cent of all notifications are receivedelectronically from Patient Administration Systems(PAS) in hospitals. These systems collect identifyingand treatment data for all patients who are admitted tohospitals throughout the State. In the past, PAS systemshave included extra fields in a cancer module, to collectdata that is relevant only to patients with cancer.

With the development of new PAS systems in NSWhospitals, the CCR redevelopment process is seekingto: ensure that the cancer module is included andimproved upon so that all relevant cases of cancer arenotified to the CCR; and to automate data checks atthe source of data entry. The business requirements ofthe Registry have been given to the suppliers of PASsystems to ensure that the necessary edits andvalidation are incorporated in the design of present andfuture PAS systems.2 These specifications will requirethe compulsory completion of the cancer module bythe expert medical coder, using relevant disease codes.Currently the completion of the module is at thediscretion of these coders.

Data dictionaryOther initiatives include defining the cancer registrydata items in a new cancer-specific data dictionary,which is available on the Department of Health’s Website.3 The 11 cancer-specific data items, which areincluded in the cancer module of the PAS systems, aredefined in this data dictionary, along with other dataitems notified to the CCR that are also used in otherdata collections such as the Inpatient StatisticsCollection (ISC).

The development of the data dictionary has involvedreviewing all data collected, and has provided theopportunity to address existing anomalies in datadefinitions used by the CCR and the Health Departmentin other collections, such as the ISC. For example, thecodes that the CCR uses to identify institutions, andthe country of birth of patients, have been changed sothat they are the same as those used by the Department of

Health. New codes have also been allocated for privatepathology laboratories. In future, the CCR will only usecodes allocated by the Department of Health. The postcodeand locality tables have also been updated and anautomatic coding facility (National Locality IndexGrouper) has been introduced to allocate residentialaddresses to local government areas and area healthservices.

The alignment to the ISC, and the introduction ofprocesses to ensure that data codes continue to be alignedwith those of the Department of Health, will help to ensurethe consistency and quality of the CCR data.

Health Information ExchangeBy June 2001, cancer notifications will be receivedfrom the Health Information Exchange (HIE).4 The HIEcomprises individual data warehouses of each areahealth services and the Department of Health. Thewarehouses are repositories of historic informationcollected from disparate operational systemsthroughout the health system, including the PASsystems. The inclusion of the cancer module data willfurther improve the quality of the data received by theCCR in a number of ways. First, notifications that haveincomplete codes on cancer type will be flagged andautomatically sent back to the facilities to update.Second, output from the HIE can be presented in aconsistent format that can be imported directly into theCCR database.

In time, notifications from pathology laboratories mayalso be incorporated into the HIE. In the short term, itis hoped that these notifications will be received in anelectronic format that will allow for data from differentpathology information systems to be received and usedby the CCR. An Australian standard has been developedfor the electronic transmission of pathology records,but further investigation is required to determine if thiscan be applied in practice using existing pathologysystems. Preliminary discussions have been held withpathology laboratories and a pilot study is beingplanned.

Workflow management systemTo process the remaining written notifications, and tostreamline the processing of notifications by the CCR,a workflow management system is being introduced.This system will include imaging facilities that capturepaper notifications in different formats as electronicimages (data in the images can be read but notmanipulated). This will increase the efficiency andaccuracy of processing incoming paper records. Theimaged records can then be read on computer screensfor processing purposes, will be much more accessiblethan paper records, and will eliminate the need foradditional, long-term storage of paper.

28Vol. 12 No. 228

MAIN DATABASE DEVELOPMENTThe present database has been fully documented,including data models that describe the relationshipbetween types of data, and the data dictionary that definesthe individual data items. User requirements for the newdatabase have been specified, and functional and technicalspecifications are being prepared. An audit of commonreasons why records fail to load onto the currentdatabase will inform the development of the matchingand code resolution algorithms for the new database. Thesealgorithms ensure not only that people are correctly linked,but also that new notifications are correctly identified asnew cancers or as re-notifications of cancers already knownto the database.

PROCESSING THE BACKLOGAs at July 2000, there was a backlog of approximately120,000 paper notifications filed alphabetically thatrequire processing. An audit of CCR processes wasundertaken to estimate average times for processingmail, sorting, coding, data entry and editing to estimatethe resources required in order to eliminate the backlogin 12 months.6 The audit results will also be used toevaluate the effect of the introduction of a workflowmanagement system. Additional staff have beenappointed and the following timetable has been set:the 1998 Cancer Registry report produced by August2001, the 1999 report by December 2001 and the 2000report by June 2002. Monitoring of the progressindicates that the Registry will deliver these reportson time or earlier.

REPORTINGConsultations were held to gain advice from membersof the Epidemiology Special Interest Group, Directorsof Health Service Development, the Central CancerRegistry, and staff of the Cancer EpidemiologyResearch Unit, on a set of standards for reports. Animproved Statistical Analysis Software (SAS) reportingmodule is nearing completion, which has a user-friendly series of drop down menus that present CCR data

geographically, demographically, clinically, and by timeperiod.

Up-to-date releases of an appropriately restricted CCRdatabase, from which data that may identify an individualhas been removed, will be produced quarterly for use withthe annual reporting module. The quarterly module willbe made available to authorised staff of the CancerCouncil’s Cancer Research and Registers Division. It mayalso be possible to make it more widely available to publichealth personnel in the NSW health system, through theHealth Outcomes Information and Statistical Toolkit(HOIST), which is a public health data warehousedeveloped and maintained by the Epidemiology andSurveillance Branch of the NSW Department of Health.

A Web-based version of the reporting module, providingaccess to a large number of pre-prepared tables, is alsobeing developed for the use of the general public. Bothtables and graphs of data in age-specific categories and inage-standardised and crude form will be available, as well asnew measures, such as person years of life lost due to cancer.

Ultimately, the redevelopment of the NSW Central CancerRegistry will result in the provision of up-to-date data oncancer incidence, mortality, prevalence and survival inflexible formats.

REFERENCES1. NSW Department of Health. Central Cancer Registry

business case for replacement Cancer Registry Systems.November 1997. Unpublished report.

2. Tracey E. Notification to the Central Cancer Registry—Outlineof business requirements. Presented to the PatientAdministration System (PAS) Consortium Meeting.December 7th 1999. Unpublished report.

3. CCR Specific Data items www.health.nsw.gov.au/iasd/dm/isc/instructions/2000-2001/isc-instructions-2000-2001.html.

4. Health Information Exchange Cancer Feed Scope, version1.11, October 2000.

5. Implementation of Health Level 7 (HL7) version 2.3.1 Part 4Pathology results for registries. AS 4700.4 October 2000.

6. Tracey E. Resource requirements for processing the backlogof CCR notifications. May 2000. Unpublished report.

Hanna Noworytko and Helen MooreEpidemiology and Surveillance BranchNSW Department of Health

Bruce ArmstrongManager, Cancer Research and RegistriesNSW Cancer Council

TOWARDS A CLINICAL CANCER INFORMATION SYSTEM

The efficient delivery of better health care depends onthe availability of information on the outcomes of healthcare. The NSW Clinical Cancer Registries Project (ClinCRs)aims to improve—at a state level—the collection, collationand analysis of data on patterns of cancer treatment andthe health outcomes of cancer patients.

Vol. 12 No. 2 29

The NSW ClinCRs collection system involves the 10referral hospitals in NSW reporting a minimum data set tothe NSW Central Cancer Registry (CCR). Subject to thesuccess of the initial implementation, the system will beexpanded to include all major non-metropolitan anddistrict hospitals, both public and private. The CCR willprocess and analyse the data, and then return a collatedstate-level minimum data set to the contributing hospitalsin a format of agreed indicators, together with an updateon the vital statistics of patients treated by particularoncology departments. This article describes the contentof the minimum data set and its relevance to improvingcancer care.

The ClinCRs project is being conducted by the NSWDepartment of Health, and is overseen by 20 members ofthe Standing Committee of Directors of Cancer Servicesand Departments. In addition, advice from a wider groupof cancer clinicians is being regularly canvassed. Theobjectives and processes of the ClinCRsimplementation are fully compatible with therecommendations of the NSW Health Council.1

CANCER CARE OBJECTIVESIn 1997, the Optimising Cancer Management ExpertAdvisory Group defined the following objectives forcancer services:

• reduce incidence of cancer• increase survival of cancer patients• improve quality of life of cancer patients• improve satisfaction with services for cancer patients

and their carers• improve equity of desirable outcomes• increase cost-effectiveness of cancer services.2

TABLE 1

CORE INDICATORS FOR CLINICAL CANCERREGISTRIES IN NSW 3

1. stage adjusted survival by time since diagnosis(absolute, relative or cause-specific).

2. distribution of patients by cancer type, stage andstaging scheme used.

3. status of disease by time since diagnosis.4. distribution of patients by performance status

score.5. status of disease at the end of definitive

treatment.6. severity adjusted treatment toxicity by toxicity

type.7. distribution of patients by treatment intent.8. proportion of cases treated according to a local

protocol based on evidence-basedguidelines.

9. proportion of patients enrolled in clinical trials.10. distribution of patients by treatment types.

The scope of the ClinCRs project is wide-ranging andincludes monitoring survival, aspects of quality of life,and equity of care. Information from the ClinCRs,supported by other data, will be used to estimate changesin incidence of cancer, satisfaction with cancer services,and cost-effectiveness of those services.

CORE INDICATORS FOR THE CLINICAL CANCERREGISTRIESLong-term and intermediate outcomes, and a vast arrayof interventions leading to the achievement of thoseoutcomes, can be monitored by a number of indicators.Cancer care clinicians ranked 60 potential indicators,from which 10 were chosen on the basis of theirimportance and their ability to be collected. These havebecome the core indicators for the ClinCRs (Table 1).3

MINIMUM DATA SET FOR THE CLINICALCANCER REGISTRIESThe ClinCRs system focuses on these 10 core indicators.To present them, 65 data items are required (Table 2);and these items have become the ClinCRs minimumdata set. A full list of this minimum data set is includedin the NSW Clinical Cancer Registers Minimum DataSet Data Dictionary,4 along with other data items thatare needed to present detailed information aboutspecific cancers.

The minimum data set makes good use of existing data.Of the 65 data items, 29 are already routinely collectedat the state level,5 and 22 are collected in most localcollections. A further 11 data items will be collected atthe state-wide level.6 Linkage with other alreadyestablished collections in the future has beenconsidered.7, 8

The ClinCRs minimum data set supports the NSWCancer Services Model, which is a service deliverymodel that promotes high-quality integrated and co-ordinated cancer care.9 Information from the ClinCRswill stimulate improvements in the quality of cancercare by providing an overview of cancer in NSW.

HOW THE MINIMUM DATA SET WILL IMPROVECANCER CARE

Monitoring the patterns of courses of treatment bystage and other prognostic indicatorsClinicians will be able to monitor prevailing patternsof treatment. For example, it will be possible to assesswhat types of cancer are treated by which surgicalprocedure, radiotherapy, chemotherapy (including oralchemotherapy); which types are receiving multimodalitytreatment, and in which order. This overview of treatmentpatterns is not presently available in NSW. The ClinCRswill report on survival and more immediate outcomes:

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TABLE 2

MINIMUM DATA SET FOR NSW CLINICAL CANCER REGISTRIES

No Data Element Comments

Person characteristics1 Given name Collected by ISC*2 Family name Collected by ISC3 Middle name Collected by ISC4 Maiden name Collected by ISC5 Previous, Alias, AKA Collected by ISC6 Sex Collected by ISC7 Address of usual residence:

Street number Collected by ISC8 Street name Collected by ISC9 Locality Collected by ISC

10 Postcode Collected by ISC11 Medicare number Collected by ISC12 Medical Record Number Collected by ISC13 Date of birth Collected by ISC14 Country of birth Collected by ISC15 Indigenous origin Collected by ISC16 Preferred language Collected by ISC17 Insurance status Collected by ISC

Death record18 Cause of death Collected by RBDM* Coded by ABS* Collected by CCR*19 Date of death Collected by RBDM Coded by ABS Collected by CCR

Provider characteristics20 Facility code Collected by ISC

Diagnosis21 Date of diagnosis of primary cancer Collected by CCR22 Diagnosis basis Collected by CCR23 Primary site Collected by CCR24 Laterality Collected by CCR25 Histological type Collected by CCR26 Behaviour of the tumour Collected by CCR27 Histopathological grade International standard

Stage of cancer at diagnosis28 Staging scheme source For differentiating between identifiable mainstream source

and Other29 Staging scheme source edition number For precise identification of an identifiable mainstream

source30 Staging basis International standard31 Stage main grouping International standard31a Degree of spread of cancer at this admission Collected by CCR32 Stage FAB–ALL grouping International standard33 Stage FAB–ANLL grouping International standard34 Prognostic additional factors International recommendations35 Staging additional descriptor International standard36 Stage paediatric group International standards37 Stage of cancer: T value International standard38 Stage of cancer: N value International standard39 Stage of cancer: M value International standard40 Performance status at diagnosis International standard

Treatment types (modalities)41 Protocol type Includes clinical trial protocols42 Surgery: Procedure type Collected by ISC43 Date of Surgery Collected by ISC44 Radiotherapy: Radiotherapy Type To be collected by RIS*45 Date of radiotherapy start To be collected by RIS46 Date of radiotherapy end To be collected by RIS47 Radiation acute toxicity type International standard. A high grade to be reported48 Radiation late toxicity type International standard. A high grade to be reported49 Radiation toxicity severity score High grade to be reported50 Date of assessment of radiation late toxicity Date recorded if late toxicity identified51 Radiotherapy target (treatment site) To be collected by RIS52 Radiation dose size To be collected by RIS53 Radiation dose type To be collected by RIS

Vol. 12 No. 2 31

breast cancer should reveal that, as recommended, themajority of cases (but not all cases) are treated withlumpectomy followed by a course of radiotherapy.Another example is monitoring the period of timebetween the date of diagnosis and surgery formelanoma, where rapid response is vital. Settingbenchmarks may be considered in some instances.

Improved ability to plan services and directingresourcesThe ClinCRs information will allow an overview of thecurrent cancer care workload on particular hospitalsby cancer site, stage and related factors. Monitoringthe trends in cancer care in different hospitals will bepossible, as well as an assessment of the implicationsfor resource allocation.

The number of patients staged before thecommencement of treatment should increaseStaging, or determining as precisely as possible the extentof tumour spread both at the site of origin and asmetastases, is a recognised prognostic tool in cancermanagement.10 Reviews of the medical records ofcancer cases in the United States report significantimprovements in the number of cases staged over the years.Overall increases in staging were as follows: 52.8 per cent

for example, duration of remission; the burden of seriousside-effects by cancer type, stage, other prognosticindicators, and treatment pattern.

Clinical cancer registries with a wide population coverageare the best option for learning about patterns of treatmentfor rare cancers where data on treatment patterns and riskadjusted relative survival are very scarce.

Comparing treatment results with other centresThe ClinCRs overview of cancer care will be simple.Nevertheless, valid comparisons of results betweenregional centres and results at the state level can be made;and it will be possible to extend these comparisons toresults achieved in other states and countries.Clinicians will evaluate ClinCRs reports and assesswhether outcomes meet the expectations based on thescientific literature and other sources of information.

Monitoring whether a recommended practice isbeing followedClinicians will be able to assess whether patterns oftreatment are consistent with the objective of high-qualitycancer care and, in many instances, be able to comparetheir results with recommended evidence-basedguidelines. For example, the treatment pattern for early

TABLE 2

MINIMUM DATA SET FOR NSW CLINICAL CANCER REGISTRIES (continued)

No Data Element Comments

Chemotherapy54 Date of chemotherapy start55 Date of chemotherapy end56 Chemotherapy toxicity type International standard. A high grade to be reported57 Chemotherapy toxicity severity score International standard. A high grade to be reported58 Date of assessment of chemotherapy late toxicity Date recorded if late toxicity identified

59 Chemotherapeutic agents standard treatment Acronyms or a single agent name, as applicable.protocol name (acronym) Approach to be tested first in NSW and later replaced by

Anti-neoplastic agent name.59a Anti-neoplastic agent name Common coding reference: Antineoplastic drugs

(a manual maintained by SEER* in the United States).60 Chemotherapeutic agent standard treatment The number of times that a combination of agents

number of cycles (protocol) was administered in the course of treatment

Intermediate outcomes61 Performance status at the end of treatment International standard62 Residual tumour International standard63 Date of diagnosis of recurrence64 Site of recurrence To be collected by RIS

Palliative care65 Palliative care status Collected by ISC

* Acronyms

ABS Australian Bureau of Statistics ISC NSW Inpatient Statistics Collection

ALL Acute Lymphatic Leukaemia RBDM Registrar of Births, Deaths and Marriages

ANLL Acute Non-Lymphatic Leukaemia RIS Radiotherapy Information System

CCR NSW Central Cancer Registry SEER Surveillance, Epidemiology and End Results program

FAB French–American–British (staging system) TNM Tumour Nodes Metastasis, a cancer staging system

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of cases were staged in 1985 and 1986, 65 per cent in1988, 76.5 per cent in 1990, 84.2 per cent in 1992, 87 percent in 1993 and 88 per cent in 1994.10, 11, 12 Increased stagingin hospitals was influenced by outside encouragement,and there was a continuous improvement in the quality,and percentage of cases staged.13

The number of local treatment protocols mayincreaseA treatment protocol for a condition describes theprocedures, types, and doses of medication to be used forpatient care. Protocols assist in the delivery of localtreatment because of their accessibility, the condensednature of their recommendations, and their portabilitybetween centres. Protocols may contain therecommendations of evidence-based guidelines, if suchare available. Guidelines are considered to be ‘slow’because they take a long time to develop, agree upon,ratify, and disseminate. They usually incorporaterecommendations with reference to many elements in themanifestation of disease and the treatment continuum.New knowledge of evidence of effectiveness is often toofragmentary to be developed into ratified guidelines;however, it can be incorporated into local protocols, whichare ideal vehicles for ‘rapid response’ to new information.The ClinCRs will be a convenient tool for monitoringevidence of effectiveness and adherence to localprotocols.

Recruitment in clinical trials may increasePoor recruitment to clinical trials in cancer care is aproblem that is influenced by a variety of factors. TheClinCRs collection will show the levels of recruitment totrials in NSW, and may assist in developing strategies toassist with the recruitment of patients.

Communication between different providers, andbetween providers and patients, will improveThe ClinCRs collection offers definitions andclassification systems which should assist with thedevelopment of a common cancer record for standardisingand streamlining communication within cancer services,with primary care providers, and with patients.

Support for the day-to-day management of cancerpatients will be gained

The NSW ClinCRs system will, with Central CancerRegistry assistance, identify patient outcomes thatmanaging clinicians may otherwise find difficult toascertain (such as death and long-term complications).

CONCLUSIONThe ClinCRs minimum data set has a very broadapplication and the potential to assist in:

• providing the basis for monitoring the quality ofservices;

• service and resource planning;• conducting clinical research;• defining a common cancer record between specialities

for day-to-day management of cancer patients.

REFERENCES1. NSW Health Council. A better health system for NSW. Report

of the NSW Health Council. Sydney: NSW Department ofHealth, 2000.

2. Epidemiology and Surveillance Branch. Optimising CancerManagement. Final Report to the Expert Advisory Group.Sydney: NSW Department of Health, April 1999.

3. Epidemiology and Surveillance Branch. Summary of theexercise to rank indicators for Clinical Cancer Registries inNSW. Sydney: NSW Department of Health, July 1999.

4. Epidemiology and Surveillance Branch. NSW Clinical CancerRegistries Minimum Data Set Data Dictionary. Edition 1:Draft for Comment. Sydney: NSW Department of Health,April 2000.

5. Information Management and Clinical Systems. InpatientStatistics Collection Instruction Manual. Sydney: NSWDepartment of Health, 1999.

6. Radiotherapy Institutional Data Set Working Party andRadiotherapy Minimum Data Set Working Party. DraftRadiotherapy Minimum Data Set. Sydney: Statewide ServicesDevelopment Branch, NSW Department of Health, 1998.

7. Australian Council on Healthcare Standards (ACHS) CareEvaluation Program. Clinical Indicators in Summary. Sydney:ACHS, 1998.

8. Centre for Health Service Development. The NSW AN-SNAPclinical training handbook. Sydney: NSW Department ofHealth, June 1999.

9. Cancer Care Model Working Party. A Cancer Care Model forNSW. Sydney: NSW Department of Health, 1999.

10. Fleming ID, Philips JL, Menck HR. The National CancerData Base report on completeness of American JointCommittee on Cancer staging in United States cancer facilities.Cancer 1996; 78: 1498–504.

11. Fleming ID, Philips JL, Menck HR, Murphy GP, WinchesterDP. The National Cancer Data Base report on recent hospitalcancer program progress towards complete American JointCommittee on Cancer–TNM staging. Cancer 1997; 80 (12):2305–10.

12. Henson DE, Menck HR, Zuber-Ocweja KE. Trends in cancerpatient staging. Steele GD, Winchester DP, Osteen RT, MenckHR, Murphy GP (editors). National Cancer Data Base:Annual review of patient care, 1994. Atlanta: American CancerSociety, 1994.

13. Smart CR, Eberle C, Simon S. An assessment of NationalCancer Data Base quality control. Steele GD, WinchesterDP, Menck HR, Murphy GP (editors). National Cancer DataBase: Annual review of patient care, 1993. Atlanta: AmericanCancer Society, 1993; 103–115.

Vol. 12 No. 2 33

Sue LooyschelderStatewide Services Development BranchNSW Department of Health

The development of information management systemsis vital to support integrated clinical and administrativepractice in cancer management. Information onpatients’ disease, their treatments and treatmentoutcomes may affect:

• survival rates• quality of patient care• patient and carer satisfaction• patient quality of life.

The NSW Department of Health recognises the importanceof information management from a clinical, administrativeand service-planning perspective. This article describesthe rationale and development of the Radiation OncologyInformation Management and Technology Strategic Plan,and its links to other cancer management and serviceplanning initiatives.

RADIOTHERAPY TREATMENT MODALITYCancer is a major cause of mortality and morbidity in thecommunity. It has been reported that 45–50 per cent of allcancer patients can be cured, approximately 30-40 percent of these by radiotherapy either alone or incombination with other treatment modalities such assurgery and chemotherapy.1 In addition, radiotherapy isan important treatment in the palliative care of cancerpatients. Overall, about 50 per cent of all cancer patientsneed radiotherapy either as part of curative or palliativetreatments.

NSW RADIATION ONCOLOGY SERVICEPROVISIONRadiation oncology services in NSW are planned at astatewide level. To meet patient demand, since 1990 theNSW Department of Health has implemented two five-year strategic plans for the expansion of radiotherapyservices:

• Radiotherapy Strategic Plan for NSW,2

• Strategic Plan for Radiotherapy Services in NSW1995–2000.3

These two plans have been developed in closeconsultation with professional groups involved inradiation oncology.

The Department supports the provision of radiotherapyas part of a comprehensive cancer care service. Twelvenew linear accelerator machines (machines thatproduce beams of X-rays or high energy electrons that

BETTER INFORMATION FOR RADIATION ONCOLOGY

are focused on to a tumour within the body) have beencommissioned for the public sector over a 10-yearperiod; including the establishment of a further fourcentres offering comprehensive cancer care in theIllawarra, St George, Liverpool and Nepean hospitals.

Unlike other states, radiation oncology services inNSW are predominantly provided by the public sector,which deliver approximately 80 per cent of all coursesof treatment. Currently there are 13 Radiation OncologyTreatment Centres—10 public and four private, with StVincent’s Hospital providing both public and privatefacilities. There are a total of 34 linear acceleratormachines installed throughout the state (Table 3).

NSW HEALTH DEPARTMENT’S RADIOTHERAPYMANAGEMENT INFORMATION SYSTEM REPORTInformation is collected annually from all NSW RadiationOncology Treatment Centres—both public and private—on equipment, treatment activity, staffing, source ofreferrals for new cases, and methods of data collection. Inaddition, referral data is collected for NSW residentsreceiving treatment at public and private services in theACT, Queensland, South Australia and Victoria. Thisinformation is collated into the Department’sRadiotherapy Management Information System Report(RMISR).4 Public centres have provided data to theRMISR since 1989 and private centres since 1994. TheRMISR assists the area health services to review localcancer services, and assists the networking of cancerservices through the development of links with specialisedradiotherapy services.

To date, information systems in NSW RadiationOncology Treatment Centres have been developed onan ad-hoc basis, with different databases and types ofinformation collected at each centre. A number ofcentres collect information for the RMISR manually,due to the limited capability of their current informationsystems. A cancer care database is expected to provideinformation for:

• conducting epidemiological studies of incidence,prevalence and survival in the community;

• providing current, quality data to support decision-making by clinicians;

• evaluating cancer treatment services, especially thecost-effective analysis of new technologies;

• planning future treatment services.

NSW HEALTH CANCER CONTROL INITIATIVESOne of the NSW Department of Health’s goals forcancer control is to provide optimal cancer

34Vol. 12 No. 234

management for all patients requiring care. TheDepartment’s Optimising Cancer ManagementInitiative (OCMI) is a strategy that was developed in1995 to respond to this goal, and to consider a numberof issues:

• cancer service organisation and delivery (that is,integration and coordination of care through thedevelopment of the Cancer Care Model for NSW);5

• promotion of consumer perspective in caremanagement;

• implementation of evidence-based guidelines incancer care;

• infrastructure development (that is, clinicalinformation systems, workforce planning andtreatment facilities).6

As part of the infrastructure development stream, a numberof information management initiatives were developed,such as:

• the development of a cancer clinical data model;• a business case for hospital-based clinical cancer

registries;• establishment of a register of existing cancer clinical

data systems;• development of a minimum data set for radiotherapy

departments.

The overall success of a number of the OCMI strategiesdepends on timely access to accurate, relevant and currentinformation. A review of the current available cancer

management information systems identified a number ofshortcomings, such as:

• a reliance on paper-based information collectionprocesses;

• problems with accuracy, timeliness and availabilityof strategic, statewide and local information;

• a lack of standards in information collection and use;• the existence of a variety of disparate information

systems among the different oncology departments.

These factors, coupled with the implementation of anumber of OCMI strategies, led to the development of theNSW Radiation Oncology Information Management andTechnology Strategic Plan for public Radiation OncologyTreatment Centres in NSW.7

NSW RADIATION ONCOLOGY INFORMATIONMANAGEMENT AND TECHNOLOGY STRATEGIC PLANIn June 1998, the NSW Department of Healthcommissioned the development of a plan to develop along-term solution for information management andtechnological improvements for radiation oncologytreatment centres. Following an extensive consultationprocess with relevant cancer management stakeholders,the plan was completed in October 1998. This processwas overseen by the Radiotherapy Information StrategySteering Committee.

The primary objectives of the plan were to:

• identify the information required by radiotherapy

TABLE 3

RADIATION ONCOLOGY TREATMENT CENTRES AND LINEAR ACCELERATORSIN NSW AT DECEMBER 2000

Area Health Service Facility Name Number of linearaccelerators

Public facilitiesCentral Sydney Royal Prince Alfred Hospital 3Hunter Newcastle Mater Misericordiae Hospital 3Illawarra Illawarra Cancer Care Centre 2Northern Sydney Royal North Shore Hospital 3South Eastern Sydney Prince of Wales Hospital 3

Cancer Care Centre, St George Hospital 3St Vincent’s Hospital 2

South Western Sydney Liverpool Cancer Therapy Centre 3Wentworth Nepean Cancer Care Centre 2Western Sydney Westmead Hospital 4Private facilitiesCentral Coast Central Coast Radiation Oncology Centre 1Northern Sydney Radiation Oncology Sydney

—Sydney Mater Misericordiae Hospital 2Sydney Adventist Hospital 2

South Eastern Sydney St Vincent’s Clinic 1

Note: Planning is advanced for a satellite centre at Campbelltown Hospital in SWSAHS.

Vol. 12 No. 2 35

departments to support clinician care and patientmanagement;

• improve the management and utilisation of thisinformation in both the treatment of patients and theplanning of services;

• establish the role of NSW radiotherapy informationmanagement within the overall framework forstatewide information on cancer, cancer control and,in particular, measuring the quality of service provisionand health outcomes in cancer care;

• identify appropriate management processes andinformation technology solutions to enable thedepartments to perform their information managementrole.

There are significant gains to be made in the bettermanagement and coordination of direct service provision(Table 4). In addition to the numerous patient, clinician

and service-oriented benefits, there are other benefits atthe Department of Health and area level, such as:

• improving the planning and implementation ofservices;

• identifying gaps in service provision;• improving decision making and resource allocation;• providing a framework for expansion of systems to

other oncology disciplines;• linkage with other systems, such as the Central Cancer

Registry, to provide more comprehensive informationregarding cancer in NSW.

Implementation of the Strategic Plan is progressing withthe assistance of a Steering Committee. Followingextensive consultation with stakeholders, functionalspecifications for ideal radiation oncology informationsystems and associated tasks have been finalised. Thesefunctional specifications have considered the major

Comprehensive Outcome DataPatient benefits Increased survival rate

Improved quality of lifeClinician benefit Feedback on treatment resultsService benefit Improvements in treatment methods

Provision of Good Quality Information for PatientPatient benefits Improved satisfaction with service

More involved in treatment decisionsClinician benefit Better response to treatment

Better compliance with treatmentService benefit Patient empowered to take role in

treatment decisions.

Efficient AdministrationPatient benefits Improved service

Better organisation of services(transport, interpreters, etc)

Clinician benefit Improved time managementService benefit Time and Cost Savings

Automated costing and billing.

Elimination of Duplication of Data EntryPatient benefits Improved serviceService benefit Time and cost savings

Reduction in errors

Effective Scheduling of AppointmentsPatient benefits Minimum number of visits

Minimum wait timesClinician benefit Can see more patients

Efficient use of timePatients and Clinicians are less stressed

Service benefit Improved patient care

Support for Development of Evidence-Based Guidelinesand Treatment ProtocolsPatient benefits Increased survival rate

Improved quality of lifeClinician benefit Improvements in treatment methods

Service benefit Optimal resource utilisationMore consistent quality of treatmentReduction in costsSupports multi-disciplinary treatment

Effective Follow UpPatient benefits Improved quality of lifeClinician benefit Improved patient care

Able to respond to problems quickerService benefit Improved patient care

Better outcomes data

Effective Information Exchange with GPs and otherReferring Service ProvidersPatient benefits Improved quality of life

Continuity of (seamless) careLess problems in obtaining accurate data at referral

Clinician benefit More timely referral detailsConjoint care with other Clinicians

Service benefit Better, more responsive after treatment careDay to day care handled by GP

Support for Integrated Approach to Patient CarePatient benefits Increased survival rateClinician benefit Improved treatment methodsService benefit Conducting integrated patient

assessmentSharing of processes

Support for Clinical TrialsClinician benefit Improved treatment methods

Professional recognitionService benefit Support for specialisation

Improved Cancer ReportingClinician benefit Better analysis of outcomesService benefit Better, more timely information to

Central Cancer RegistryImproved statewide statistical reporting

TABLE 4

BENEFITS OF AN ONCOLOGY INFORMATION SYSTEM

Source: NSW Radiation Oncology Information Management and Technology Strategic Plan 7

36Vol. 12 No. 236

information functions required for improved efficacy andefficiency of the delivery of radiotherapy services, such as:

• patient appointment scheduling and follow-up• resource management• tracking of patient flow• clinical management• clinical auditing of patterns of care• quality assurance and treatment statistics• patient treatment summaries• patient accounts• notifications to the NSW Central Cancer Registry.

As a first step towards streamlining the process of selectingsuitable information systems, current potential radiationoncology information systems were reviewed through anexpression-of-interest process in November 2000. Thiswill be followed by a selective tender process for aninformation system that will comply with the developedfunctional specifications. It is envisaged there will be oneor more systems available for selection by publicRadiation Oncology Treatment Centres in NSW.

In order to extend this process into other areas of oncologywithin comprehensive cancer care centres, a business casehas been submitted to the Office of Information Technology(OIT) for a similar development in medical oncology. Thebusiness case has been supported by OIT for submission toNSW Treasury.

RADIATION ONCOLOGY SERVICE PLANNINGAs a result of improved information management, therewill be more complete information available for planningpurposes. A Radiation Oncology Planning Group wasconvened in early 2000 to oversee the development ofa strategic plan for radiation oncology services in NSWto 2006. This group will plan for radiation oncologyservices and equipment needs to 2006, considering issuesthat affect the planning of services, such as:

• planning methodology• potential demand for high-utiliser cancers• treatment complexity• future technological developments• comprehensive cancer care provision.

It is envisaged that the third Strategic Plan will becompleted in 2001.

ACKNOWLEDGEMENTSThe valuable work of Joanna Kelly and Kathy Smith,Health Informatics, is acknowledged for theircontinued efforts with the implementation of the NSWRadiation Oncology Information Management andTechnology Strategic Plan.

REFERENCES

1. Swedish Council on Technology Assessment in Health Care.Critical Issues in Radiotherapy. Stockholm: SB Offset AB,1996.

2. NSW Department of Health, Statewide Services DevelopmentBranch. Radiotherapy Strategic Plan for New South Wales.Sydney: NSW Department of Health, 1991; 91–12.

3. Statewide Services Development Branch. Strategic Plan forRadiotherapy Services in New South Wales 1995–2000.Sydney: NSW Department of Health, 1995.

4. Statewide Services Development Branch. 1998 RadiotherapyManagement Information System Report. Sydney: NSWDepartment of Health, 1999.

5. NSW Department of Health. Optimising Cancer ManagementInitiative—A Cancer Care Model for NSW. Sydney: NSWDepartment of Health, 1999.

6. NSW Department of Health. Optimising Cancer ManagementInitiative – Final Report to the Expert Advisory Group. Sydney:NSW Department of Health, 1999.

7. Deakin Consulting Pty Ltd. NSW Radiation OncologyInformation Management and Technology Plan. Sydney:NSW Department of Health, October 1998. (Unpublished).

Richard Taylor, Greg Heard and John BoyagesNSW Breast Cancer InstituteUniversity of Sydney (Westmead)

This article discusses the methods of estimation of cancerrisk in populations and individuals from reportedincidence data using breast cancer in NSW women asan example.

ESTIMATING A WOMAN’S RISK OF BREAST CANCER: THEEFFECTS OF AGE AND FAMILY HISTORY

The use of the term ‘risk’ alone implies absolute (notrelative) risk. The absolute risk is the chance (probability)of an event occurring over a specified time period.Absolute risks lie between zero (never) and one (certainty).One minus the absolute risk is the probability of anevent not occurring. Risk is frequently calculated inpublic health and clinical medicine for diseaseoccurrence (incidence), death, complications from a

Vol. 12 No. 2 37

disorder, recurrence of cancer after primary treatment, andmany other events. Relative risk (RR) derives from theratio of two incidences—usually in the unexposed, andvarious categories of the exposed, to putative causalfactors for a disease or condition. RR does not inform usof the absolute risk of an event. For example, the RR foran event associated with all exposure with incidences offour per million per year in the exposed and two per millionin the unexposed is the same as it would be if theincidences were four per 100 per year and two per 100 peryear, that is: 2.0.

USES OF CANCER RISK INFORMATIONReliable information on the occurrence of breast canceris required for clinical and public communicationconcerning the risks of this disease to individuals andpopulations, and for informing policy for secondaryprevention through regular mammographic screening.While RR is a convenient way of expressing susceptibilityto cancer according to different exposure (putative causal)factors, it cannot be used on its own for population riskestimation or to provide information of the actual risk ofcontracting a disease over a specified period.

Public health and health promotion professionals need toknow the absolute risk of breast cancer in local populationsover particular age ranges so that they can convey riskmeaningfully to women and encourage compliance with

mammographic screening. Furthermore, health plannersrequire data on the numbers of women with breast cancerlikely to present in the future in particular populations, toensure appropriate resources are available to treat patients.Clinicians need to know absolute risks of breast cancerover the remaining life span in women of different ageswho ask for advice on their risk, particularly for thosewith a positive family history of breast cancer or otherrisk factors. Women need to understand risk of breastcancer as it applies to themselves so that they can makeinformed choices regarding mammographic screening andmedical surveillance, and prophylactic options such astamoxifen or even mastectomy.

ESTIMATION AND PRESENTATION OF CANCERRISK

Approaches to estimation

Two types of data can be used to estimate breast cancerrisk in individuals and populations: data from large cohortstudies and data from population incidence data. Cohortdata provide a wealth of information on risk in womenwith a variety of risk factors, but studies generally havebeen on unrepresentative populations from countrieswith different underlying rates of breast cancer.1

Population incidence data have been commonly usedto estimate absolute cumulative risk using thehypothetical cohort method. The use of cumulative risks

TABLE 5

CUMULATIVE RISK OF BREAST CANCER TO AGE 79 YEARS IN THE POPULATION AND WITH PRESENCE ORABSENCE OF A FAMILY HISTORY*

Cumulative risk of breast cancer across the specified age range

Exact Age General No family Any first Any first First-degree Motherage of range population† history degree relative degree relative relative andwoman (yrs) age≥50† age<50† (any age) and sister(yrs) second-degree (any age) †

relative*(any age) †

% 1 in % 1 in % 1 in % 1 in % 1 in % 1 in20 20–79 8.6 12 7.8 13 13.1 8 16.5 6 19.5 5 25.4 425 25–79 8.6 12 7.8 13 13.1 8 16.5 6 19.5 5 25.4 430 30–79 8.6 12 7.8 13 13.1 8 16.4 6 19.4 5 25.3 435 35–79 8.5 12 7.7 13 12.9 8 16.1 6 19.1 5 25.0 440 40–79 8.3 12 7.5 13 12.6 8 15.5 6 18.6 5 24.4 445 45–79 7.8 13 7.1 14 11.8 8 14.3 7 17.4 6 23.1 450 50–79 7.0 14 6.4 16 10.7 9 12.4 8 15.6 6 21.1 555 55–79 6.1 16 5.6 18 9.4 11 10.5 10 13.6 7 18.7 560 60–79 5.1 20 4.7 21 7.8 13 8.5 12 11.3 9 15.8 665 65–79 4.0 25 3.6 28 6.0 17 6.4 16 8.8 11 12.4 870 70–79 2.7 37 2.5 40 4.2 24 4.4 23 6.1 16 8.6 1275 75–79 1.4 72 1.3 79 2.1 47 2.3 44 3.1 32 4.5 22

*Based on 1996 NSW breast cancer incidence (adjusted for screening effect)

†Unadjusted for competing causes of death

38Vol. 12 No. 238

derived from cross-sectional data is similar to actuariallife table methods, and is helpful for quantification ofwhat would happen to a hypothetical cohort if it passedthrough the age-specific rates used in the calculations.The application of cumulative risks to the future is madewith the caveat that this is what would be expected ifcontemporary, age-specific incidence rates were tocontinue.

Adjustment for the effect of screeningThe implementation of mammographic screening in acommunity leads to a higher population incidence ofbreast cancer because of the additional diagnosis ofcancers which would have presented later withoutscreening (‘borrowing cancers from the future’),particularly during the initial (‘prevalent’) rounds inwomen in the screening age groups.2 A reasonable andresponsible approach is to adjust reported incidenceduring the introduction of population-basedmammographic screening, to provide realistic measuresof breast cancer risk.3

Display of absolute riskAlthough data are routinely available on the ‘lifetime’risk (usually taken as birth to the average life expectancy),

estimated from current age-specific breast cancerincidence, this information is rarely given for a variety ofage ranges or for the remainder of life. Yet this is requiredin both the population and individual situations sincethe (cumulative) absolute risk for the remainder of alifetime declines with age because women have fewer yearsto live as they age, even though the age-specific risksincrease with age. Life expectancies at particular agescan be employed as the upper-limit for cumulation of risk.Cumulative risk can also be expressed for the targetscreening age ranges (50–69 years), or for the next 10 or20 years (or other interval) from a particular age. Risk isusually given as a proportion (%), or as its reciprocal 1 inx, where x is expressed as an integer.

Estimation of absolute risk in the presence of riskfactorsMost of the available information on breast cancer risk inAustralian women only applies to the general population,not to women with particular risk factors. Information fromcohort studies can provide data that enable the calculationof absolute risk of incidence of breast cancer in relationto risk factors. Absolute risks of breast cancer by riskfactor can also be obtained by multiplying relativerisks for various categories of risk factor (versus

FIGURE 1

CUMULATIVE ABSOLUTE, RESIDUAL, LIFETIME RISK TO AGE 79 YEARS FOR BREAST CANCERIN AUSTRALIAN WOMEN BY AGE AND FOR SELECTED CATEGORIES OF FAMILY HISTORY

0 10 20 30 40 50 60 70 800

2

4

6

8

10

12

14

16

18

20

Age (years)

Cum

ulat

ive

risk

(%)

Population

No familyhistory

One 1st degreerelative <50 yrs

One 1st degreerelative 50+ yrs

Vol. 12 No. 2 39

absence of risk factor) with the risk in the generalpopulation;4 but this relationship does not hold withhigher absolute risks and a significant prevalence of therisk factor in the general population.5 In these instances itis preferable to estimate the baseline risk of breast cancerin women with the absence of a risk factor usingattributable factors.3 Age-specific rates of breast cancerfor various categories of a risk factor can then calculatedby applying RRs for various categories of risk factorcompared to no risk factors.

RISK OF BREAST CANCER IN NSW WOMENThe age-specific breast cancer incidence data used in thisarticle were derived from 1972–1996 statewide data fromthe NSW Central Cancer Registry. Female populationsare derived from data based on successive quinquennialcensuses. These data are more recent than availablenational data, which, in any case, could not be modelledeffectively because of the relatively brief time seriesavailable.

Adjustment for screening effectThe ‘underlying’ incidence of breast cancer in NSW for1996, allowing for the effects of mammographic screening,was estimated from a Poisson regression model of breastcancer incidence data, using a stable period effect derivedfrom 1972–1989.3,6 This method led to lower incidenceof breast cancer compared to unadjusted data, particularlyfor the age groups 50–64 years (most of the target agerange for screening), and produced lifetime riskscomparable to that for NSW from the early 1990s (Table5). The lifetime risk of breast cancer from these rates (onein 12) is similar to that calculated from NSW breast cancerincidence using data from the early 1990s.7

Estimation of absolute risks according to risk factorsThe absolute risk of incidence of breast cancer in relationto family history can be calculated from the attributablefraction (AF), and has been described in more detail forcalculation of risks of disease and mortality in smokersand non-smokers.8,9 The method estimates breast cancerincidence rates in women with no family history from theincidence in the population and the AF; RRs are thenapplied to obtain incidence for various categories of familyhistory. AFs for the Australian population for breast cancerfrom family history were calculated indirectly,10 using RRsfrom the international meta-analysis performed byPharoah et al.,1 and prevalence of family history from theQueensland mammographic screening program,11 toobtain estimates of absolute risk of breast cancer forthe remainder of a lifetime for women at different ages(Table 5).1, 11

Data expressed as absolute risk are more intuitivelyunderstandable than RRs between women with and

without a family history of breast cancer, or differences inrates of incidence between groups.4 The risks given inthis article apply to women with average breast cancerrisk from other factors. For individual women, the risk ofbreast cancer is dependent on risk factors other than familyhistory, and women with specific genetic syndromes—such as those associated with the BRCA1 and BRCA2genes—require individualised risk assessment, as dowomen with a family history that includes other cancers.12

Calculation of cumulative riskAge-specific incidence rates can be converted to cohortprobabilities, and also summarised as cumulative risksover particular age ranges:13

Cumulative risk = 1 – exp (- Cumulative rate).

Cumulative risks were calculated from decade and mid-decade ages to age 79 years which is the approximate lifeexpectancy at birth of Australian women in the 1990s.Cumulative risks of breast cancer by age (to age 79 years)in the general population, for those without family history,and for those with various categories of family history areset out in Table 5, and illustrative data are included inFigure 1. The cumulative risk of developing breastcancer to age 79 years decreases with advancing agebecause there are fewer years remaining to experienceage-specific risks.

Compared with an average lifetime risk (to age 79 years)of around 8.5 per cent (1 in 12) for the general populationand 7.8 per cent or 1 in 13 for those without a familyhistory. Women with one first-degree relative with breastcancer ≥≥≥≥≥50 years have a higher lifetime risk of 1 in 8, withwomen with one first-degree relative—that is parents,siblings and children—with breast cancer < 50 having alifetime risk of 1 in 6. First-degree women with a first- anda second-degree relative—that is uncles, aunts, nieces,nephews and grandparents on both sides of the family—or a mother and sister with breast cancer (any age), have ahigher lifetime risk of 1 in 4–5 (see Table 5).

An important finding is that by age 60 years, the groupswith one relative with breast cancer are well above a 90per cent probability of not developing breast cancer toage 79 years, and those with a first-degree relative withbreast cancer age ≥≥≥≥≥50 have a cumulative risk over theremaining years of 7.8 per cent (1 in 13), which is thesame as the lifetime risk (to age 79 years) in those with nofamily history.

CONCLUSION

The cumulative, absolute risk of breast cancer for theremainder of a lifetime declines with age because of thediminished number of remaining years, even though theage-specific risks increase with age. Therefore, in clinical

40Vol. 12 No. 240

Marylon Coates and Elizabeth TraceyNSW Cancer Council

This article highlights some of the information availablefrom the latest report of cancer incidence and mortality inNSW,1 published by the NSW Cancer Council in June2000. A decrease in cancer mortality was confirmed forboth males and females. The incidence rate of prostatecancer fell for the third successive year in 1997. Thisfollowed a dramatic increase in rates between 1988 and1994, and is associated with widespread use of prostatespecific antigen testing. Detailed information is providedfor the first time for liver cancer and mesothelioma, twoless common cancers that have rapidly increasingincidence and mortality rates.

THE 1997 REPORTCancer has been a notifiable disease since January1, 1972.Notifications are provided by patient care institutions and

CANCER IN NSW: INCIDENCE AND MORTALITY 1997

pathology laboratories.

The annual report of cancer incidence and mortalitycontains:

• numbers and rates• leading cancers• most common cancers by age• childhood cancers• trends and projections• information about specific cancers including five-year

survival and regional variation• age-specific tables of incidence and mortality• appendices describing the Central Cancer Registry,

coding practices, demography of NSW, statistics andpublications.

MOST COMMON CANCERSFor 1997, 27,285 new cases of cancer and 11,594 deathsattributed to cancer were registered. Prostate, lung,

settings, it is important to have available informationabout lifetime risk for various age ranges for the remainderof life, so that women can be offered advice that is specificto their personal and family circumstances.

ACKNOWLEDGEMENTThe NSW Breast Cancer Institute receives financialsupport from the NSW Department of Health.

REFERENCES1. Pharoah P, Day N, Duffy S, Easton D, Ponder B. Family

history and the risk of breast cancer: a systematic review andmeta-analysis. Int J Cancer 1997; 71: 800–9.

2. Quinn M, Allen E. Changes in incidence of and mortalityfrom breast cancer in England and Wales since the introductionof screening. BMJ 1995; 311: 1391–5.

3. Taylor R, Boyages J. Absolute risk of breast cancer forAustralian women with a family history. Aust NZ J Surgery2000; 70: 725–31.

4. Pharoah P, Mackay J. Absolute risk of breast cancer in womenat increased risk: a more useful clinical measure than relativerisk? The Breast 1998; 7: 255–9.

5. Dupont WD, Plummer WD Jr. Understanding the relationshipbetween relative and absolute risk. Cancer 1996; 77: 2193–9.

6. Taylor R, Rushworth RL. Hysterectomy fractions in NSW,1971–2006. Aust N Z J Public Health 1998; 22: 759–64.

7. Taylor R, Smith D, Hoyer A, Coates M, McCredie M. BreastCancer in NSW 1972–91. Sydney: NSW Cancer Council,September 1994.

8. Taylor R. Estimating risk for tobacco-induced mortality fromreadily available information. Tobacco Control 1993; 2: 18–23.

9. Taylor R. Risks from premature deaths from smoking in 15-year-old Australians. Aust J Public Health 1993; 17: 358–64.

10. Armitage P, Berry G. Statistical Methods in Medical Research,3rd edition. Oxford: Blackwell Scientific Publications, 1994.

11. BreastScreen Queensland State Coordination Unit. Annualstatistical report for 1996. Brisbane: Queensland Health, 1998.

12. Hopper JL. Genetic testing: review of the scientific literature.Discussion Paper. Sydney: NHMRC National Breast CancerCentre, 1995.

13. Day N. Cumulative rate and cumulative risk. In: Muir C,Waterhouse J, Mack T, Powell J, Whelan S (editors). CancerIncidence in Five Continents, Vol V. IARC Scientificpublication, No. 88. Lyon: International Agency for Researchon Cancer, 1987; Chapter 10.

Vol. 12 No. 2 41

Stomach

Bladder

Kidney

Mesothelioma

Liver

All sites

Non-Hodgkin's lymphoma

Brain

Melanoma

Lung

Pancreas

Rectum

Head and neck

Testis

ProstateOvary

Body of uterus

CervixBreast

Colon

Thyroid

Leukaemia

-4.0 -2.0 0.0 2.0 4.0 6.0 8.0 10.0

Per cent per annum

Males Females

FIGURE 2

ANNUAL CHANGES IN CANCER INCIDENCE RATES FOR MALES AND FEMALES, NSW, 1987 TO 1997

melanoma of skin, colon and rectum were the five mostcommon cancers in males (accounting for 61 per cent ofall cancer in males). Cancers of breast, melanoma of skin,colon, lung and rectum were the five most common infemales (accounting for 59 per cent of all cancers infemales).

TRENDS IN INCIDENCE AND MORTALITYBetween 1987 and 1997, the incidence rates for cancer ofall sites combined rose by 17 per cent for males and 11 percent for females. The major contributors to this increasewere prostate cancer and melanoma in males, and breastand lung cancer and non-Hodgkin’s lymphoma in females.Notable trends described in the report included thefollowing:

• incidence rates for prostate cancer fell in 1997following rapid increases between 1988 and 1994;

• incidence rates continued to fall for cervical cancer,there were fewer than 300 cases in 1997;

• there were falling incidence rates of some of themore common cancers that have low survival ratessuch as lung cancer, head and neck, and pancreaticcancer in males and stomach and bladder cancer inboth males and females;

• the rate of lung cancer in females prior to the ageof 50 years is now equal to that of males.Projections indicate that lung cancer rates in malesand females will continue to converge with similarrates per 100,000 expected in 2006 (30.8 in malescompared to 28.7 in females);

• there was a 16 per cent fall in age standardisedmortality rates from breast cancer from 1987–1997;

• the incidence and mortality rates of liver cancerand mesothelioma have increased dramatically

42Vol. 12 No. 242

since the early 1970s, and are described in two newfeature pages;

• when all cancers are considered together, mortalityrates have fallen annually since 1987 by 1.3 per centin males and 0.9 per cent in females. Age-adjustedmortality in both males and females was the lowest ithas been since the Cancer Registry began operationin 1972;

• the large increases in the incidence of cancers of theprostate in males and breast in females have not beenreflected in mortality rates;

• changes in mortality from stomach, pancreatic, liver,and lung cancers and mesothelioma are similar to thosein incidence.

Figures 2 and 3 show the average annual changes inincidence and mortality from 1987 to 1997.

Kidney

Mesothelioma

Melanoma

Liver

Rectum

Stomach

All sites

Head and neck

Testis

Prostate

Ovary

Body of uterus

Cervix

Breast

Colon

Pancreas

Lung

Bladder

Brain

Thyroid

Non-Hodgkin's lymphoma

Leukaemia

-6.0 -4.0 -2.0 0.0 2.0 4.0 6.0 8.0 10.0

Per cent per annum

Males Females

FIGURE 3

ANNUAL CHANGES IN CANCER MORTALITY RATES FOR MALES AND FEMALES, NSW, 1987 TO 1997

WEB SITEFurther information can be found under ‘Statistics’ onthe NSW Cancer Council’s Web site atwww.cancercouncil.com.au. A printed copy of Cancerin New South Wales: Incidence and Mortality 1997 canbe ordered by mail from the NSW Cancer Council,Locked Mail Bag 1, Kings Cross, NSW 1340; or bytelephone at (02) 9334 1902.

REFERENCE1. Coates MS, Tracey EA. Cancer in New South Wales:

Incidence and Mortality 1997. Sydney: NSW CancerCouncil, 2000.

Vol. 12 No. 2 43

FACTSHEET

C R E U T Z F E L D - J A K O B D I S E A S E

WHAT IS CREUTZFELD-JAKOB DISEASE?Creutzfeldt-Jakob disease (CJD) is a rare and fatal braindisease in humans. It is a type of disease known as atransmissible spongiform encephalopathy (TSE) becauseit causes characteristic spongy breakdown of the brainand it can be transmitted. Other animals—such as sheep,cows and cats—can also develop TSEs.

THE FOUR MAIN TYPES OF CJD.

Sporadic (classical) CJDThis is the most common form, responsible for 85 per centof cases. The cause is unknown. It mainly affects peopleaged over 50 years.

Familial CJDThis is an inherited form of the disease with a youngerage of onset. It causes 10–15 per cent of cases of CJD.

Iatrogenic CJDThis occurs through the inadvertent use of infectiousmaterial in medical procedures.

Variant CJDThis is a newly-recognised type that was first discoveredin 1996 in the United Kingdom. It is caused by the sameinfectious agent that causes ‘mad cow disease’ (BSE orBovine Spongiform Encephalopathy) that has affectedcattle in the United Kingdom and other parts of Europe. Itis different to sporadic CJD because it usually affectsyounger people, who have a longer duration of illness. Italso has slightly different clinical features and can bedistinguished from sporadic CJD by postmortemlaboratory examination of brain tissue (that is, after theperson has died). Evidence of the infection can also befound in lymph tissue, such as tonsils.

WHAT CAUSES CJD?It is thought that an infectious agent, known as a prion,causes the damage to the brain. Prions are different toother infectious agents (such as bacteria and viruses)because they are made from a protein that is normallypresent in all cells. It is believed that the prion causesnormal cell proteins to change into abnormal cell proteins,and that these build up in the brain, causing damage.

In inherited CJD the genes that tell the body how to makethe protein may be faulty. In iatrogenic CJD the abnormalprotein comes from contaminated tissue or instruments.Variant CJD is thought to occur when the prion is ingestedin contaminated beef or beef products. It is unclear if otherrisk factors or predisposing factors are needed to enablethe prion to cause disease. In sporadic CJD no one knowshow the abnormal protein arises.

HOW COMMON IS CJD?CJD is rare. It occurs worldwide at a rate of 0.5 to 1case per million per year. Overall, Australia has aboutthe same case rate as other countries. Because of therelationship with Bovine Spongiform Encephalopathy,most cases of variant CJD have occurred in the UnitedKingdom (a total of 85 cases as of November 2000).An additional three cases have been reported in Franceand one in Ireland. Because CJD can have anincubation period of many years, it is unclear howmany new cases of variant CJD will occur. As ofFebruary 2001 no cases of variant CJD or BSE havebeen reported in Australia.

WHAT ARE THE SYMPTOMS OF CJD?CJD causes progressive symptoms of difficulty withcoordination, muscle jerks and memory loss with eventualdementia. Variant CJD can also cause mood disturbanceand altered sensations. CJD is fatal, usually within a yearof onset of symptoms. At present there is no cure.Treatments for symptoms such as pain and muscle jerksare very important in caring for people with CJD.

HOW IS CJD DIAGNOSED?A definite diagnosis can only be made by examining braintissue after death. There are however other tests such asCAT scans, MRI scans and EEGs that can be highlysuggestive of the diagnosis and are used to rule out otherdiagnoses. People with variant CJD may have the prionprotein present in their tonsils and other tissues.

CAN YOU CATCH CJD?In Australia, iatrogenic CJD has been caused by the use ofhuman growth hormone taken from the pituitary glandsof cadavers that are infected with CJD. Currently, as thereis no Bovine Spongiform Encephalopathy in Australiancattle, no risk is posed by eating Australian beef or beefproducts. Beef and beef products from countries withinfected cattle have been banned from import to Australia.

There is no evidence that sporadic CJD is spread by bloodtransfusion. There is a theoretical possibility that variantCJD could be transmitted by blood transfusion, althoughthis has never been reported. As a precautionary measure,people who have spent six months or more in Great Britainbetween 1980 and 1996 cannot donate blood. This isbecause beef and beef products consumed in Great Britainduring this time could have come from cows harbouringBSE infection. Regular surveillance for BSE in cattle iscarried out routinely in Australia.

There is no evidence that CJD can be transmitted bynormal social contact.

For further information contact your doctor, community health care centre, or your nearest public health unit.

44Vol. 12 No. 244

TRENDSAs 2000 drew to a close, there were declines in thenotifications of several important infections (Figure 4).Numbers of new cases of gonorrhoea are beginning todecline; as are cases of meningococcal disease afterreaching a seasonal peak (33) in September. Pertussis

COMMUNICABLE DISEASES, NSW: FEBRUARY 2001

notifications also seemed to have peaked in September(504), but the epidemic may be shifting from rural areasto metropolitan Sydney. Laboratory notifications ofrubella increased in late 2000, and peaked in October(55). Most cases notified were young men, with a largeproportion residing in the Hunter Area (Table 6).

Michelle WensleyClinical SystemsNSW Department of Health

The Clinical Information Access Project (CIAP) Web sitecontinues to provide a comprehensive range of peer-reviewed information 24 hours a day, seven days a week,via the Internet and Intranet. Utilisation of the Web sitehas steadily increased, with an average of 1.5 million ‘hits’per month, and a total of over 15 million ‘hits’ since itsinception in July 1997. Feedback from users continues tobe positive and there is a high demand for education onhow to effectively search the many databases linkedthrough the Web site.

In 1998, the CIAP Web site was nominated by PCAuthority as one of the top 10 medical Web sites inAustralia, and received both the Data ManagementAssociation Australia Achievement Award for excellencein information management and the Australian Libraryand Information Association, NSW Branch Merit Awardfor services to rural and remote users and the community.

The purpose of the CIAP Web site is to:

• provide support for decision making within the publichealth system;

• promote evidence-based practice;

WHAT’S NEW ON THE CIAP WEB SITE

• improve communications at the point of care (that is,wherever a patient is located).

Content of the Web site has grown over the past threeyears in response to requests by clinicians, and thefollowing on-line information has recently been added:

• Medweaver: for differential diagnosis and disease lookup;• Micromedex: AltMedREAX—interactions related to

herbal medicines and other dietary supplements;• Antibiotic Guidelines (updated version 11);• St Vincent’s Hospital Nursing Monographs, 1990–2000;• NSW Clinical Nurse Consultants Web site;• NSW Therapeutic Assessment Group (TAG) Web site.

Other relevant Web sites can be added to this list byadvising CIAP via the Feedback link available from theCIAP Web site.

The knowledge databases on the Web site are protectedby password, and are accessible to any health professionalemployed in the NSW public health system. To obtain apassword, or further information about CIAP, contactMichelle Wensley, Clinical Systems, NSW Department ofHealth; by telephone (02) 9391 9742; or by emailmwens@doh.health.nsw.gov.au; or by visiting the CIAPWeb site at www.clininfo.health.nsw.gov.au orinternal.health.nsw.gov.au:2001.

Vol. 12 No. 2 45

NSW populationMale 50%

<5 7%5–24 28%

25–64 52%65+ 13%

Rural* 42%

Oct–Dec 00Male 50%

<5 0%5–24 16%

25–64 71%65+ 13%

Rural 97%

Oct-Dec 00Male 63%

<5 0%5–24 0%

25–64 25%65+ 75%

Rural 25%

Oct–Dec 00Male 58%

<5 47%5–24 47%

25–64 5%65+ 0%

Rural 5%

Oct–Dec 00Male 54%

<5 35%5–24 48%

25–64 13%65+ 4%

Rural 33%

Oct–Dec 00Male 68%

<5 57%5–24 30%

25–64 11%65+ 3%

Rural 95%

0

1 0 0

2 0 0

3 0 0

4 0 0

5 0 0

0

5

10

15

20

0

100

200

300

400

500

0

20

40

60

80

100

120

0

20

40

60

80

100

120

140

160

0

1 0

2 0

3 0

4 0

0

100

200

300

0

200

400

600

800

Jan95

Jan96

Jan97

Jan98

Jan99

Jan00

0

2 0 0

4 0 0

6 0 0

J an9 5

J an9 6

J an9 7

J an9 8

J an9 9

J an0 0

0

50

100

150

200

250

Oct–Dec 00Male 91%

<5 <1%5–24 24%

25–64 74%65+ 1%

Rural 13%

Oct–Dec 00Male 47%

<5 23%5–24 27%

25–64 42%65+ 8%

Rural 49%

Oct–Dec 00Male 47%

<5 10%5–24 49%

25–64 37%65+ 4%

Rural 49%

Oct–Dec 00Male 65%

<5 6%5–24 52%

25–64 39%65+ 3%

Rural 16%

Oct–Dec 00Male 86%

<5 1%5–24 71%

25–64 28%65+ 0%

Rural 83%

FIGURE 4

REPORTS OF SELECTED COMMUNICABLE DISEASES, NSW, JANUARY 1995 TO DECEMBER 2000,BY MONTH OF ONSET

These are preliminary data: case counts for recent months may increase because ofreporting delays. Laboratory-confirmed cases, except for measles, meningococcal diseaseand pertussis actual predicted after adjusting for likely reporting delays

cases cases

Arbovirus Legionella

Cryptosporidiosis (not reportable before MeaslesDecember 1996)

Gonorrhoea Meningococcal disease

Hepatitis A Pertussis

Rubella Salmonellosis

* For definition, see NSW Public Health Bulletin, April 2000

46

Vol. 12 No. 2

46

Area Health Service (2000) TotalCondition CSA NSA WSA WEN SWS CCA HUN ILL SES NRA MNC NEA MAC MWA FWA GMA SA CHS for Dec† To date†

Blood-borne and sexually transmittedAIDS - - 2 - - 1 - - 14 1 - - - - - - - - 18 136HIV infection* - - 1 - - - - - - - - - - - - - - - 2 297Hepatitis B - acute viral* - - - - - - - - - - - - - - - - - - - 91Hepatitis B - other* 15 31 - 3 11 - 8 2 58 3 3 1 3 - 2 3 6 - 150 4,294Hepatitis C - acute viral* - 1 - - - - - - - - - - - - - - - 1 2 125Hepatitis C - other* 27 28 59 20 9 20 40 10 104 19 15 7 10 11 8 9 12 31 440 8,425Hepatitis D - unspecified* - - - - - - - - - - - 1 - - - - - - 1 10Hepatitis, acute viral (not otherwise specified) - - - - - - - - - - - - - - - - - - - 1Chancroid* - - - - - - - - - - - - - - - - - - - -Chlamydia (genital)* 1 39 26 16 2 8 32 2 88 5 9 10 3 4 6 6 5 2 267 3,380Gonorrhoea* 1 6 8 2 1 3 1 - 25 1 1 - - 2 1 - - - 55 1,054Syphilis - - 6 - 2 1 - - 14 1 1 2 1 - - - - - 29 536

Vector-borneArboviral infection (BFV)* - - - - - - 1 - - 4 2 3 - - - - - - 10 196Arboviral infection (RRV)* - - - - - - 2 - - 1 1 1 2 1 1 - 1 - 10 723Arboviral infection (Other)* - - - - - - - - - - - - - - - - - - - 27Malaria* - - 3 - - - - - - - - - - - - - - - 3 226

ZoonosesBrucellosis* - - - - - - - - - - - - - - - - - - - 1Leptospirosis* - - - - - - - - - - - - 1 1 - - - - 2 56Q fever* - - - - - - 1 - - 1 - - 1 2 - - - - 5 117

Respiratory and otherBlood lead level* - - - 1 - - 2 - 4 1 1 - 1 - 22 - 1 - 33 966Legionnaires’ Longbeachae* - - - 1 1 - - - - - - - - - - - - - 2 11Legionnaires’ Pneumophila* - - - - - - - - 1 - - - - - - - - - 1 26Legionnaires’ (Other)* - - - - - - - - - - - - - - - - - - - 3Leprosy - - - - - - - - - - - - - - - - - - - 3Meningococcal infection (invasive) - 3 4 2 3 2 2 - 2 1 - - - - - - - - 19 244Mycobacterial tuberculosis 1 3 4 2 3 - - - 7 - 4 - - 1 - - - - 25 418Mycobacteria other than TB 3 2 - - - 1 1 1 - - 3 1 - - - - - - 12 337

Vaccine-preventableAdverse event after immunisation - - 1 - - - - - 2 - - - - - - - - - 3 29H.influenzae b infection (invasive)* - - - - - - - - - - - - - - - - - - - 9Measles 1 - - - 2 - - - 4 - - - - - - - - - 7 37Mumps* - - - - - - - - - - - - - - - - - - - 92Pertussis 9 59 26 15 26 5 85 3 36 5 9 13 12 17 - 12 6 - 339 3,569Rubella* - - 1 - 1 - 12 - - - - - - - - - - - 14 179Tetanus - - - - - - - - - - - - - - 1 - - - 1 2

Faecal-oralBotulism - - - - - - - - - - - - - - - - - - - -Cholera* - - - - - - - - - - - - - - - - - - - -Cryptosporidiosis* - - - - - - - - - 3 - 1 3 - - 2 1 - 10 129Giardiasis* - 14 6 3 - 2 5 2 12 7 - 3 - - 1 1 - - 56 963Food borne illness (not otherwise specified) - - - - - - - - 3 - - - - - - - - - 3 162Gastroenteritis (in an institution) - - - - - - 4 - 24 - - - - - - - - - 28 558Haemolytic uraemic syndrome - - - - - - - - - - - - - - - - - - - 5Hepatitis A* 2 1 1 - 2 - - - - - - - - - - - - - 6 200Hepatitis E* - - - - - - - - - - - - - - - - - - - 6Listeriosis* 1 - - - - - - - 2 - - - - - - - - - 3 15Salmonellosis (not otherwise specified)* - 19 31 4 2 9 12 2 14 13 4 5 4 - 2 - 2 - 126 1,306Typhoid and paratyphoid* - - 1 - - - - - - - - - - - - - - - 2 44Verotoxin producing Ecoli* - - - - - - - - - - - - - - - - - - - 1

* lab-confirmed cases only † includes cases with unknown postcode

CSA = Central Sydney AreaNSA = Northern Sydney AreaWSA = Western Sydney Area

WEN = Wentworth AreaSWS = South Western Sydney AreaCCA = Central Coast Area

HUN = Hunter AreaILL = Illawarra AreaSES = South Eastern Sydney Area

NRA = Northern Rivers AreaMNC = North Coast AreaNEA = New England Area

MAC = Macquarie AreaMWA = Mid Western AreaFWA = Far West Area

GMA = Greater Murray AreaSA = Southern AreaCHS = Corrections Health Service

REPORTS OF NOTIFIABLE CONDITIONS RECEIVED IN DECEMBER 2000 BY AREA HEALTH SERVICESTABLE 6

Vol. 12 No. 2 47

NSW PUBLIC HEALTH BULLETINThe NSW Public Health Bulletin is a publication of the NSWDepartment of Health.The editor is Dr Lynne Madden, Manager, Public Health Trainingand Development Unit.Dr Michael Giffin is managing editor.

The Bulletin aims to provide its readers with population healthdata and information to support effective public health action.

Submission of articlesArticles, news and comments should be 1000 words or less inlength and include a summary of the key points to be made in thefirst paragraph. References should be set out in the Vancouverstyle, described in the New England Journal of Medicine, 1997;336: 309–315. Send submitted articles on paper and in electronicform, either on disc (Word for Windows is preferred), or by email.The article must be accompanied by a letter signed by all authors.Full instructions for authors are available on request from themanaging editor.

Editorial correspondencePlease address all correspondence and potential contributions toThe Editor, NSW Public Health Bulletin, Locked Mail Bag 961,North Sydney, NSW 2059, Australia or by email tophbulletin@doh.health.nsw.gov.au.Tel: 61 2 9391 9241, Fax: 61 2 9391 9232.

DistributionPlease contact your local Public Health Unit or telephone 62 29391 9942 to obtain copies of the NSW Public Health Bulletin. Anew subscribers/change of address form is printed in most issuesof the Bulletin for your use. The Bulletin can be accessed via theInternet from the Department’s Web site at:www.health.nsw.gov.au/public-health/phb/phb.html . Back issuescan be obtained from the Public Health Training and Develop-ment Unit, Locked Mail Bag 961, North Sydney, NSW 2059,Australia.

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