Changing roles of population-based cancer registries in Australia
David Roder A B , Nicola Creighton A , Deborah Baker A , Richard Walton A , Sanchia Aranda A and David Currow AA Cancer Institute NSW, PO Box 41, Alexandria, NSW 1435, Australia. Email: nicola.creighton@cancerinstitute.org.au; deborah.baker@cancerinstitute.org.au; richard.walton@cancerinstitute.org.au; sanchia.aranda@cancerinstitute.org.au; david.currow@cancerinstitute.org.au
B Corresponding author. Email: david.roder@unisa.edu.au
Australian Health Review 39(4) 425-428 https://doi.org/10.1071/AH14250
Submitted: 16 December 2014 Accepted: 4 February 2015 Published: 23 March 2015
Journal Compilation © AHHA 2015
Abstract
Registries have key roles in cancer incidence, mortality and survival monitoring and in showing disparities across the population. Incidence monitoring began in New South Wales in 1972 and other jurisdictions soon followed. Registry data are used to evaluate outcomes of preventive, screening, treatment and support services. They have shown decreases in cancer incidence following interventions and have been used for workforce and other infrastructure planning. Crude markers of optimal radiotherapy and chemotherapy exist and registry data are used to show shortfalls against these markers. The data are also used to investigate cancer clusters and environmental concerns. Survival data are used to assess service performance and interval cancer data are used in screening accreditation. Registries enable determination of risk of multiple primary cancers. Clinical quality registries are used for clinical quality improvement. Population-based cancer registries and linked administrative data complement clinical registries by providing high-level system-wide data. The USA Commission on Cancer has long used registries for quality assurance and service accreditation. Increasingly population-based registry data in Australia are linked with administrative data on service delivery to assess system performance. Addition of tumour stage and other prognostic indicators is important for these analyses and is facilitated by the roll-out of structured pathology reporting. Data linkage with administrative data, following checks on the quality of these data, enables assessment of patterns of care and other performance indicators for health-system monitoring. Australian cancer registries have evolved and increasingly are contributing to broader information networks for health system management.
Traditional roles
Cancer registries perform a fundamentally important role in monitoring incidence, mortality and survival by cancer type across the population and show sociodemographic disparities.1 Registries are indispensible for demonstrating the changing burden of cancers and how they affect different segments of the population. Incidence monitoring first began in NSW in 1972 but other jurisdictions soon followed.1 The Australian Institute of Health and Welfare first compiled and reported national data in 1982, followed shortly after by survival data.1,2
Registry data help to direct initiatives to improve preventive, screening, treatment and support services.3–5 Examples of this include the targeting of antismoking and cervical screening initiatives at lower socioeconomic and remote sectors of the population in response to elevated incidence rates of lung and cervical cancers in those groups.6,7 Registry data demonstrated the decreases in cancer incidence following these initiatives.6,7
Cancer registry data are also used for workforce and other infrastructure planning.8–10 Crude markers of optimal radiotherapy and chemotherapy use have been developed;11,12 registry data have been used to show shortfalls in service delivery against these markers,11,12 leading to improvements in service configuration.8–10
Registry data are used to investigate cancer clusters.13–15 Cancer concerns arising from exposures to occupational and ambient environmental hazards are also investigated with registry data.16–21 Examples have included exposures to radon gas in mining and household settings,16 asbestos dust in mining, building and domestic environments,17 combustion products of fossil fuels,18 agricultural pesticides,19 industrial solvents,20 and by-products of water disinfection.21
More recent roles
Health service evaluations use survival data from registries to assess service performance.22 Favourable trends have included improved survival from childhood cancers, cancers of the breast, large bowel, testis, lymphomas and chronic myeloid leukaemia.23,24 Conversely emerging cancers of concern are highlighted, with current examples including mesothelioma and hepatocellular carcinoma.
Registry data enable interval cancer rates to be determined and are used as part of the accreditation of screening services.25 Registries are used to evaluate effects of screening and treatment services on cancer mortality and to investigate downsides, including potential for ‘over-diagnosis’.26–31
The risk of multiple primary cancers following index cancer diagnoses has been investigated with registry data, along with implications for medical surveillance protocols.32 Clinical quality registries are used for clinical quality surveillance and improvement.33 They commonly rely on population-based registry data for assessing cancer coverage and the extent to which their recorded cases are representative of all cases.34 Population-based cancer registries complement the role of local clinical registries when, for example, the local registry no longer has a person in their geographical catchment area, thus allowing for more complete survival analyses.34
The US Commission on Cancer has long used clinical registries (hospital-based) for quality assurance and service accreditation.35 Clinical registry data on case survival, patterns of care and other clinical indicators have been used to assess service quality.34
Emerging roles
Increasingly, population registry data are linked with administrative data on service delivery to assess system-wide performance.36–40 Addition of tumour/node/metastases (TNM) cancer stage and other prognostic indicators to registry databases is important for these analyses and is facilitated by the increased use of structured pathology reporting advocated by the Royal College of Pathologists of Australasia.41
Registry data linkage with administrative data enables assessment of patterns of care and other performance indicators for health-system monitoring.36–40 Administrative data may lack the quality of customised registry data, but they complement the registry data and are adequate for showing broad population-wide patterns of care.34,36–38 Clinical registries may be used to validate linked administrative data in instances where these data cover common patient groups.34,40
Increasing timeliness of service monitoring
Population-based cancer registry data generally are not available until a year (at best) after reporting periods of interest in order to gain maximum accuracy and complete case ascertainment.1 To achieve greater currency for quality assurance, administrative data are sometimes substituted but are of more variable quality. Examples include linked hospital and death record data. The accuracy of such alternatives needs to be checked and cancer registry data are used for this purpose. NSW cancer registry data are used to validate the accuracy of more timely linked hospital and death record data by direct comparison of data from these sources for earlier periods of data overlap. Linked NSW hospital and death data are commonly used to monitor surgical resection rates and associated mortality rates.36–38 The validity of these data needs to be checked when service agencies use them to monitor service performance. This validation process is illustrated with pancreatic cancer data.
Figure 1 shows good agreement between numbers of pancreatic cases and resection rates derived from the cancer registry and linked databases compared with data from the admitted patient dataset and the death index for 2005–2008. (The larger difference in case numbers for 2009 reflects partial completion of cancer coding for that year at the time of data extraction.).
|
Figure 2 shows good agreement for patient demographics and tumour primary site for 2005–2009, although for histology type, recording is less complete in hospital administrative data. Linked registry, hospital and death data and linked hospital and death data gave similar 90-day mortality rates of 5.3% and 5.5% respectively for all causes of death for 2001 to 2006. One-year survivals were also similar at 75.7% and 73.5%.
|
For these applications, the contemporary linked administrative data for pancreatic cancer appear to be accurate enough for broad population-based monitoring.
Conclusion
Roles of Australian cancer registries have evolved since their introduction in the 1970s. Increasingly they are contributing to broader information networks for health systems management. In addition to traditional incidence and mortality monitoring, data on stage and stage-specific survivals and linked patterns of care are being used. Structured reporting (pathology, surgery and radiology) is increasing opportunities for automated collection by registries of data on stage, grade, biomarkers and other prognostic indicators.
Competing interests
None declared.
References
[1] Australian Institute of Health and Welfare (AIHW), Australasian Association of Cancer Registries. Cancer in Australia: an overview, 2006. Cancer series no. 37. Cat. no. CAN 32. Canberra: AIHW; 2007.[2] Bonett A, Roder D. Monitoring case survival by histological type for lung cancer, breast cancer and non-Hodgkin’s lymphomas – one function of a population-based registry. Community Health Stud 1982; 6 223–7.
| Monitoring case survival by histological type for lung cancer, breast cancer and non-Hodgkin’s lymphomas – one function of a population-based registry.Crossref | GoogleScholarGoogle Scholar |
[3] Australian Government, Preventative Health Taskforce. Australia: the healthiest country by 2020. A discussion paper prepared by the National Preventative Health Taskforce. Canberra: Commonwealth of Australia; 2008.
[4] Australian Institute of Health and Welfare (AIHW). Cervical screening in Australia 2009–2010. Cancer series 67. Cat. no. CAN 63. Canberra: AIHW; 2012.
[5] Cancer Council Australia, Clinical Oncology Society of Australia. How the national health reform process can deliver a sustainable, evidence-based “National Cancer Plan”. Submission from the Cancer Council Australia/Clinical Oncological Society of Australia to the National Health and Hospital Reform Commission. Sydney: Cancer Council Australia; 2008.
[6] Australian Institute of Health and Welfare (AIHW), Cancer Australia. Lung cancer in Australia: an overview. Case series no. 64. Cat. no. CAN 58. Canberra: AIHW; 2011.
[7] Australian Institute of Health and Welfare (AIHW), Cancer Australia. Gynaecological cancers in Australia: an overview. Cancer series no.70. Cat. no. CAN 66. Canberra: AIHW; 2012.
[8] Health Workforce Australia. National cancer workforce strategic framework. Adelaide: Health Workforce Australia; 2013.
[9] Cancer Council NSW (CCNSW). Improving radiotherapy. Where to from here? A roadmap for the NSW Government. Woolloomooloo: CCNSW; 2009.
[10] Australian Medical Workforce Advisory Committee (AMWAC). The specialist radiation oncology workforce in Australia. Supply and requirements, 1997–2007. AMWAC Report 1998.2. Sydney: AMWAC; 1998.
[11] Barton MB, Jacob S, Shafig J, Wong K, Thompson SR, Hanna TP, Delaney GP. Estimating the demand for radiotherapy from the evidence: a review of changes from 2003 to 2012. Radiother Oncol 2014; 112 140–4.
| Estimating the demand for radiotherapy from the evidence: a review of changes from 2003 to 2012.Crossref | GoogleScholarGoogle Scholar | 24833561PubMed |
[12] Barton M. Evidence-based benchmarks for cancer services. Cancer News and Information. Sydney: Cancer Institute NSW; 2014. <http://www.cancerinstitute.org.au/news-events/latest-news/evidence-based-benchmarks-for-cancer-services>
[13] National Health and Medical Research Council (NHMRC). Statement on cancer clusters. Canberra: NHMRC; 2012.
[14] Stewart BW. “There will be no more!”: the legacy of the Toowong breast cancer cluster. Med J Aust 2007; 187 178–80.
| 17680747PubMed |
[15] Driscoll T. Investigation of a reported cluster of multiple myeloma cases at the CSIRO Black Mountain site. Gladesville: EMC Technologies Pty Ltd; 2012.
[16] Lubin JH, Boice JD, Edling C, Hornung RW, Howe GR, Kunz E, Kusiak RA, Morrison HI, Radford EP, Samet JM, Tirmarche M, Woodward A, Yao SX, Pierce DA. Lung cancer in radon-exposed miners and estimation of risk from indoor exposure. J Natl Cancer Inst 1995; 87 817–27.
| Lung cancer in radon-exposed miners and estimation of risk from indoor exposure.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DyaK2MzhtFegsw%3D%3D&md5=f956bf1d35100f0fe6cdc5ff1eb129aaCAS | 7791231PubMed |
[17] National Health and Medical Research Council (NHMRC). Asbestos related diseases. Canberra: NHMRC; 2014.
[18] Natusch DF. Potentially carcinogenic species emitted to the atmosphere by fossil-fueled power plants. Environ Health Perspect 1978; 22 79–90.
| Potentially carcinogenic species emitted to the atmosphere by fossil-fueled power plants.Crossref | GoogleScholarGoogle Scholar | 1:CAS:528:DyaE1cXktlOns74%3D&md5=3bb49a538de0b5812cd905ee96804b24CAS | 648494PubMed |
[19] Cancer Council Australia. Position statement. Pesticides and cancer. Sydney: Cancer Council Australia; 2013.
[20] Centers for Disease Control and Prevention. Workplace safety and health topics. Organic solvents. Cincinnati: National Institute for Occupational Safety and Health; 2013.
[21] Villanueva CM, Cantor KP, Grimalt JO, Malats N, Silverman D, Tardon A, Garcia-Closas R, Serra C, Carrato A, Castaino-Vinyals G, Marcos R, Rothman N, Real FX, Dosemeci M, Kogevinas M. Bladder cancer and exposure to water disinfection by-products through ingestion, bathing, showering, and swimming pools. Am J Epidemiol 2007; 165 148–56.
| Bladder cancer and exposure to water disinfection by-products through ingestion, bathing, showering, and swimming pools.Crossref | GoogleScholarGoogle Scholar | 17079692PubMed |
[22] Australian Institute of Health and Welfare (AIHW), Cancer Australia, Australasian Association of Cancer Registries. Cancer survival and prevalence in Australia: cancer diagnosed from 1982 to 2004. Cat. no. CAN 38. Canberra: AIHW; 2008.
[23] Baade PD, Youlden DR, Valery PC, Hassall T, Ward L, Green AC, Aitken JF. Population-based survival estimates for childhood cancer in Australia during the period 1997–2006. Br J Cancer 2010; 103 1663–70.
| Population-based survival estimates for childhood cancer in Australia during the period 1997–2006.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BC3cbos1GmtA%3D%3D&md5=2d1f360abd8f632a960e17513c373deeCAS | 21063404PubMed |
[24] Australian Institute of Health and Welfare (AIHW). Cancer survival and prevalence in Australia: period estimates from 1982 to 2010. Cancer Series no. 69. Cat. no. CAN 65. Canberra: AIHW; 2012.
[25] Australian Institute of Health and Welfare (AIHW). BreastScreen Australia monitoring report 2010–2011. Cancer Series no.77. Cat. no. CAN 74. Canberra: AIHW; 2013.
[26] Morrell S, Taylor R, Roder D, Dobson A. Mammography screening and breast cancer mortality in Australia: an aggregate cohort study. J Med Screen 2012; 19 26–34.
| Mammography screening and breast cancer mortality in Australia: an aggregate cohort study.Crossref | GoogleScholarGoogle Scholar | 22345322PubMed |
[27] Taylor R, Morrell SL, Estoesta J, Brassil A. Mammography screening and breast cancer mortality in New South Wales, Australia. Cancer Causes Control 2004; 15 543–50.
| Mammography screening and breast cancer mortality in New South Wales, Australia.Crossref | GoogleScholarGoogle Scholar | 15280633PubMed |
[28] Roder D, Houssami N, Farshid G, Gill G, Luke C, Downey P, Beckmann K, Iosifidis P, Grieve L, Williamson L. Population screening and intensity of screening are associated with reduced breast cancer mortality: evidence of efficacy of mammography screening in Australia. Breast Cancer Res Treat 2008; 108 409–16.
| Population screening and intensity of screening are associated with reduced breast cancer mortality: evidence of efficacy of mammography screening in Australia.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BD1c7ptlyruw%3D%3D&md5=f5962a76d9a0d2e95ad168084817b4e6CAS | 18351455PubMed |
[29] Nickson C, Mason KE, English DR, Kavanagh AM. Mammographic screening and breast cancer mortality: a case–control study and meta-analysis. Cancer Epidemiol Biomarkers Prev 2012; 21 1479–88.
| Mammographic screening and breast cancer mortality: a case–control study and meta-analysis.Crossref | GoogleScholarGoogle Scholar | 22956730PubMed |
[30] Morrell S, Barratt A, Irwig L, Howard K, Biesheuvel C, Armstrong B. Estimates of overdiagnosis of invasive breast cancer associated with screening mammography. Cancer Causes Control 2010; 21 275–82.
| Estimates of overdiagnosis of invasive breast cancer associated with screening mammography.Crossref | GoogleScholarGoogle Scholar | 19894130PubMed |
[31] Beckmann K, Lynch J, Hiller J, Farshid G, Duffy S, Roder D. Estimating over-diagnosis of breast cancer. Int J Cancer ;
| Estimating over-diagnosis of breast cancer.Crossref | GoogleScholarGoogle Scholar |
[32] Heard A, Roder D, Luke C. Multiple primary cancers of separate organ sites: implications for research and cancer control (Australia). Cancer Causes Control 2005; 16 475–81.
| Multiple primary cancers of separate organ sites: implications for research and cancer control (Australia).Crossref | GoogleScholarGoogle Scholar | 15986102PubMed |
[33] McNeil JJ, Evans SM, Johnson NP, Cameron PA. Clinical-quality registries: Their role in quality improvement. Med J Aust 2010; 192 244–5.
| 20201755PubMed |
[34] South Australian Cancer Registry. Epidemiology of cancer in South Australia. Incidence, mortality and survival. 1977 to 1999. Incidence and mortality 1999. Adelaide: Openbook Publishers; 2000.
[35] Commission on Cancer. Cancer program standards 2012: ensuring patient-centred care. V1.2.1. Chicago: American College of Surgeons & Commission on Cancer; 2012.
[36] Currow DC, You H, Aranda S, McCaughan BC, Morrell S, Baker DF, Walton R, Roder DM. What factors are predictive of surgical resection and survival from localised non-small cell lung cancer? Med J Aust 2014; 201 475–80.
| What factors are predictive of surgical resection and survival from localised non-small cell lung cancer?Crossref | GoogleScholarGoogle Scholar | 25332036PubMed |
[37] Smith RC, Creighton N, Lord RV, Merrett ND, Keogh GW, Liauw WS, Currow DC. Survival, mortality and morbidity outcomes after oesophogastric cancer surgery in New South Wales, 2001–2008. Med J Aust 2014; 200 408–13.
| Survival, mortality and morbidity outcomes after oesophogastric cancer surgery in New South Wales, 2001–2008.Crossref | GoogleScholarGoogle Scholar | 24794674PubMed |
[38] Jorgensen ML, Young JM, Dobbins TA, Solomon MJ. Predictors of variation in colorectal cancer care and outcomes in New South Wales: a population-based health data linkage study. Med J Aust 2014; 200 403–7.
| Predictors of variation in colorectal cancer care and outcomes in New South Wales: a population-based health data linkage study.Crossref | GoogleScholarGoogle Scholar | 24794673PubMed |
[39] Beckmann KR, Bennett A, Young GP, Roder DM. Treatment patterns among colorectal cancer patients in South Australia: a demonstration of the utility of population-based data linkage. J Eval Clin Pract 2014; 20 467–77.
| Treatment patterns among colorectal cancer patients in South Australia: a demonstration of the utility of population-based data linkage.Crossref | GoogleScholarGoogle Scholar | 24851796PubMed |
[40] Cancer Australia. Cancer data to improve cancer survival. Sydney: Cancer Australia; 2012.
[41] Royal College of Pathologists of Australasia (RCPA). Structured pathology reporting of cancer. Sydney: RCPA; 2014.
