Cancer information systems and effective cancer control - developments in Australia

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1 Cancer information systems and effective cancer control - developments in Australia Mark Elwood, Paul Ireland, Margaret Staples NATIONAL CANCER CONTROL INITIATIVE, AUSTRALIA

2 Cancer information systems and effective cancer control: Developments in Australia presented by Mark Elwood Director National Cancer Control Initiative

3 Perth-Brisbane about 3000 miles Pop 19,581, June 02

4 Cancer Registration in Australia 6 states, 2 territories: each has cancer register all supported by legislation; registration compulsory earliest 1972; all areas contributing since 1982 government and voluntary funding larger areas have epidemiology research groups

5 Canberra - national capital

6 National Cancer Statistics Clearing House Location: Australian Institute of Health and Welfare AIHW, Canberra Funding: Federal S u pervision: Australasian Association of Registries AACR Cancer Functions: compilation & publication of national data identification of multiple registrations / multiple tumours record linkage to National Death Index facilitate cancer research and evaluation of interventions

7 Cancer in Australia

8 Cancer incidence: Australia and Canada Rate/ 100,000 eligible; age stand. to world stand. pop. B reast F Prostate M Incid Can Incid Aust Colon/Rectum Melanom a ofskin Lung Non-Hodgkin lym phom a Corpus uterif Bladder Oralcavity Ovary etc.f

9 5 yr relative survival, all sites, diagnosis in Australia United States SEER 20 M ales Fem ales

10 5 yr.. relative survival, all sites, approx Scotland ( ) 60 England and W ales ( ) D enm ark ( ) 50 Europe* ( ) 40 Italy ( ) Finland ( ) 30 Iceland ( ) 20 M ales Fem ales Australia ( ) United States ( )

11 Cancer prevalence and active prevalence by record linkage Western Australia PIs Darcy Holman, Kate Brameld Brameld K et al., AustNZJPubHlth 26, 164-9, 2002

12 Trends in prevalence of all cancers in Western Australia females, Prevalence per 1000 population Data incom plete prior to this point Year estimated totalprevalence diagnosed within 10 years diagnosed within 5 years active prevalence diagnosed within 1 year

13 A boriginal health

14 Ratio A:nA (log) Ratio of age stand. cancer incidence Aboriginal: other Northern Territory Site liver cervix leukaem ia lung stom ach bladder uterus prostate breast colorectal melanom a Allcancer

15 Cancer in Aboriginal and Torres Strait Islander (ATSI) peoples Cancer incidence differences increased risk liver, cervix, lung decreased risk colorectal, breast, prostate, melanoma Cancer survival disadvantages all cancers? staging? access to treatment? acceptability of treatment?

16 Australia s special cancer proble m

17 Frequency of non-melanoma skin cancer Household survey by proportional stratified sa mpling over 1 year Subjects asked about treated skin cancers in last year, and for consent to contact doctor Enquiries to obtain type, body site, pathology Analysis by age, gender, latitude, skin type Surveys in 1985,1990,1995, and 2002 (ongoing)

18 Frequency of non-melanoma skin cancer 1995 by latitude Rate per 100, BCC,male BCC,fem ale SCC,male SCC,fem ale 0 < >37 Latitude degrees south

19 40 Changes in BCC rate 1985 to 1995, by age % change Age group

20 Melanoma incidence per 100,000 by depth, Queensland; females in situ < >=

21 Registries and cancer control

22 Cancer control two themes O pti mising cancer care Ne w initiatives Clinical guidelines Surveys of clinical management Incentives to improve ments Consensus approach Formal analysis

23 Cancer control 1: Optimizing cancer care

24 Evidence based guidelines for cancer management Prepared by Australian Cancer Network formally evidence based involve health professionals and consumers public consultation process independent peer review specialist, family physician, and consumer guides

25 Clinical management surveys of cancer Registry based National surveys for breast, colorectal many other sites, state based organized by registries, clinical oncology groups, Australian Cancer Network about 40 so far Response rates 75 to 97%

26 National colorectal cancer care survey New diagnoses of colorectal cancer from 1 Feb to 30 April 2000, from cancer registries; n= 2383 Questionnaires to surgeons (2383), and to medical oncologists (722) and radiation oncologists (234) if relevant Response rate 83% from surgeons PI: Prof. Allan Spigelman

27 An evidence-based model of optimum radiotherapy use Review of evidence base for RT usage Dynamic model to plan service needs PI: Michael Barton Consultant: Dr W. Mackillop (Kingston)

28 Review of indications for radiotherapy C ancer incidence by site D istribution by stage D istribution by other factors e.g. perform ance status Evidence based R T indications Sum m ation gives total R T indications by site

29 Optimal and actual RT use: breast cancer by stage Opt Aust95 Syd 92 ACS 95 SEER 95 0 St1 St2 St3 St4 Total

30 Cancer control 2: New initiatives

31 NCCI consultation on cancer control priorities, to p ic areas 36 working parties 276 actions proposed 146 actions selected survey of 667 stakeholders 30 actions selected w orkshops in each state/te rr. 21 actions proposed 13 highest priority

33 NCCI consultation on cancer control priorities (1997) Resulted in 21 priorities for action up to 2001 Substantial action on almost all since then Actions funded by government and nongovernment groups Priorities reassessed in

34 Priorities for Action on Cancer Control: 2001 assessment Inclusion criteria: clear and defined interventions sufficient evidence to assess effectiveness both increm ents and decre ments across disease pathway fro m prevention to palliation effects on m ortality, m orbidity and quality of life ranked important by consultation processes

35 Priorities for Action on Cancer Control: Cancer Strategies Group, chair B. Armstrong; economist R. Carter Further assessment: 1. scientific evidence of effectiveness 2. marginal cost-benefit analysis by consistent m ethod 3. assessm e nt of equity implications 4. assessm ent of feasibility im plications

37 Priorities for Action on Cancer Control 2001:13 priorities Prevention:e.g.. reduce smoking, reduce sun exposure, increase fruit & vegetable consumption Diagnosis:e.g.. start colorectal screening, change cervical screening to 3 yearly Coordinated care: e.g.. specialist nurses for breast cancer; psychological support to all patients

38 Mean cost/daly (gross, before offsets) 6000 Tobacco* 4000 SunSmart* Cost/DALY Fruit & veg* Breast nurses Psychologists

39 Mean cost/daly (gross, before offsets) Cost/DALY Tobacco SunSmart Fruit & veg Breast nurses Psychologists Colorectal screening

40 Mean cost/daly Cost/DALY Tobacco SunSmart Fruit & veg Breast nurses Psychologists Colorectal screening Cervix 2 to 3 yrs Cervix 18 to 25

Equity and acceptability (modified from original) Costbenefit Size Evidence Equity Accept Tobacco +++ ++ ++ 0 + Fruit & veg +++

41 Equity and acceptability (modified from original) Costbenefit Size Evidence Equity Accept Tobacco Fruit & veg ? ++ Breast nurses Psychologists ? CRC screen ??? Cervix freq ?? Cervix age ??

42 Thanks to. Paul Ireland, Margaret Staples, Karen Pedersen, Melissa Glogolia NCCI Graham Giles Joanne Aitken Melbourne, Vict and AACR Brisbane, Qld Kate Bramell, Tim Threlfall Perth, WA Michael Barton Liverpool, NSW Allan Spigelman, Allison Boyes Newcastle, NSW Chris Stevenson AIHW, Canberra John Condon Darwin, NT

44 Priorities for Action on Cancer Control 2001 Prevention: reduce smoking reduce sun exposure increase fruit & vegetable consumption Diagnosis: start colorectal screening change cervical screening to 3 yearly improve skin lesion diagnosis facilitate informed choice on PSA

45 Priorities for Action on Cancer Control 2001 Coordinated care: seamless breast care multidisciplinary care for lung, ovary use of clinical guidelines breast cancer nurses psychosocial care provision palliative care strategy

46 Part of breast cancer tree: ductal carcinoma in situ (DCIS) Breast conserving surgery (BCS) appropriate 0.67 Outco me 1 = RT 8.7 % DCIS 0.13 prop. of all breast ca. BCS inappropriate 0.33 local recurrence 0.01 no local recurrence 0.99 Outco me 2 Outco me 3 = RT 0.04 % = No RT 0%

47 Record Linkage: Western Australia Research *** M O NICA CHD Register Medicare Prescribed Drugs Nursing Homes Hospital Data Home Care Electoral Roll Master Linkage File Births Deaths Midwives Records M ental Health Register Cancer Register Hospital Morbidity

Cancer in Australia: Actual incidence data from 1991 to 2009 and mortality data from 1991 to 2010 with projections to 2012

bs_bs_banner Asia-Pacific Journal of Clinical Oncology 2013; 9: 199 213 doi: 10.1111/ajco.12127 ORIGINAL ARTICLE Cancer in Australia: Actual incidence data from 1991 to 2009 and mortality data from 1991