Access to cancer treatment in non-metropolitan areas of Australia. Amgen Australia Pty Ltd

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1 Access to cancer treatment in non-metropolitan areas of Australia Amgen Australia Pty Ltd September 2011

2 Contents Glossary...i Executive Summary...i 1 An overview of cancer What is cancer? Prostate and breast cancer A literature review on access to cancer treatment Variations in cancer epidemiology Access to cancer treatment Improving access to cancer treatment Mapping access to cancer treatment Incidence of breast and prostate cancer Hospitals that deliver cancer treatment Average distance to cancer treatment Focusing on specific FEDs Choosing FEDs Postcodes with the greatest distance to cancer treatment Potential improvements in providing cancer treatment References Appendix A Estimated number of new cancer cases Appendix B - Hospitals offering cancer treatment Appendix C Distance versus population among postcodes Limitation of our work Charts Chart 1.1 : Incidence and mortality rates for breast cancer in females Chart 1.2 : Incidence and mortality rates for prostate cancer Chart 2.1 : Proportion of resident population by remoteness areas Chart 2.2 : Proportion of cancer patients who receive treatment, by type Tables Table 1.1 : Estimated leading causes of the cancer burden of disease... 9 Table 1.2 : Hospitalisations with a principal diagnosis of cancer, Table 2.1 : Incidence and mortality of prostate and breast cancer, by remoteness

3 Table 3.1 : Estimated breast and prostate cancer incidence rates, by state/territory Table 3.2 : Estimated breast and prostate cancer incidence rates, by age and gender, Table 3.3 : Estimated number of new cases of breast and prostate cancer, Table 3.4 : Estimated average distance to cancer-related infusion services, by state/territory 45 Table 3.5 : Estimated average distance to radiotherapy services, by state/territory Table 3.6 : Estimated average distance to cancer-related infusion services, by FED Table 3.6 : Estimated average distance to cancer-related infusion services, by FED continued 47 Table 3.7 : Estimated average distance to radiotherapy services, by FED Table 3.7 : Estimated average distance to radiotherapy services, by FED continued Table 4.1 : Average distance to cancer treatment and estimated number of new cancer cases for selected FEDs Table 4.2 : The five furthest postcodes to cancer-related infusion services, by selected FEDs. 54 Table 4.3 : The five furthest postcodes to cancer-related infusion services, by selected FED continued Table 4.4 : Distance to nearest GP versus distance to nearest cancer-related infusion service 58 Table A.1 : Estimated number of new breast and prostate cancer cases by FEDs, Table B.1 : Planned cancer treatment sites by state/territory Table B.2 : Hospitals offering cancer-related infusion services in Australia Table B.3 : Hospitals offering radiotherapy services in Australia Table C.1 : Distance to nearest cancer-related infusion service versus population of postcode78 Figures Figure 3.1 : Estimated number of new cases of breast and prostate cancer by FEDs, Figure 3.2 : Location of radiotherapy and cancer-related infusion services across Australia Figure 3.3 : Incidence of breast and prostate cancer compared to location of cancer treatment in Australia, Figure 3.4 : Incidence of breast and prostate cancer compared to location of cancer treatment in ACT, Figure 3.5 : Incidence of breast and prostate cancer compared to location of cancer treatment in NSW, Figure 3.6 : Incidence of breast and prostate cancer compared to location of cancer treatment in Sydney, Figure 3.7 : Incidence of breast and prostate cancer compared to location of cancer treatment in Northern Territory, Figure 3.8 : Incidence of breast and prostate cancer compared to location of cancer treatment in Queensland,

4 Figure 3.9 : Incidence of breast and prostate cancer compared to location of cancer treatment in Brisbane, Figure 3.10 : Incidence of breast and prostate cancer compared to location of cancer treatment in South Australia, Figure 3.11 : Incidence of breast and prostate cancer compared to location of cancer treatment in Adelaide, Figure 3.12 : Incidence of breast and prostate cancer compared to location of cancer treatment in Tasmania, Figure 3.13 : Incidence of breast and prostate cancer compared to location of cancer treatment in Victoria, Figure 3.14 : Incidence of breast and prostate cancer compared to location of cancer treatment in Melbourne, Figure 3.15 : Incidence of breast and prostate cancer compared to location of cancer treatment in Western Australia, Figure 3.16 : Incidence of breast and prostate cancer compared to location of cancer treatment in Perth, Figure 4.1 : Map of selected FEDs... 51

5 Glossary ABS AEC AIHW BCCA CanNET CON COSA DoHA FED GP NBOCC PATS PBS PSA RCCE RICS SLA SMU Australian Bureau of Statistics Australian Electoral Commission Australian Institute of Health and Welfare British Columbia Cancer Agency Cancer Service Networks Communities Oncology Network Clinical Oncological Society of Australia Department of Health and Ageing federal electoral division general practitioner National Breast and Ovarian Cancer Centre Patient access and travel scheme pharmaceutical benefits scheme prostate specific antigen Regional Cancer centre of Excellence Rural/Regional Integrated Cancer Services statistical local area single machine unit

6 Executive Summary Cancer imposes a substantial burden on Australian society, from a financial and personal perspective. Around 50% of males and 33% of females will develop cancer within their lifetime, and 20% will die from cancer before they turn 85 years of age (AIHW 2010). Cancer is the second leading cause of mortality in Australia (behind cardiovascular disease), accounting for 39,884 deaths in 2007 (AIHW 2010). Of all cancers, prostate and breast cancer are some of the most burdensome, imposing years of poor health and reducing total years of life. Prostate cancer is the second leading cause of cancer disease burden among males (behind lung cancer), and breast cancer is the leading cause of cancer disease burden among females. In 2007, there were 19,403 new cases of prostate cancer and 12,567 new cases of breast cancer (AIHW 2010). Prostate and breast cancer combined is the second leading cause of death, accounting for 2,938 and 2,680 deaths respectively in 2007 (AIHW 2010). was commissioned by Amgen Australia Pty Ltd to evaluate the literature surrounding cancer treatment and cancer outcomes in non-metropolitan Australia, and to quantify access to cancer-related treatments. Access was defined as the distance to the nearest cancer-related treatment, including the nearest infusion service for the intravenous delivery of cancer-related treatment (i.e., chemotherapy) and radiotherapy service. This study has found large disparities in cancer outcomes between people living in metropolitan versus non-metropolitan regions. Incidence rates and mortality rates for prostate cancer are higher in non-metropolitan regions, along with breast cancer mortality rates. Heathcote and Armstrong (2007) note possible reasons for the disparity in cancer survival, including: more difficult access to cancer treatment due to poor transport links and shortage of healthcare providers in non-metropolitan regions; higher proportion of Indigenous Australians in non-metropolitan regions who are generally more economically disadvantaged than other populations; and a higher proportion of people from lower socioeconomic backgrounds living in nonmetropolitan regions, leading to: differences in cancer knowledge and health behaviours; later tumour stage at diagnosis; issues with affordability of care; and reduced ability to access the full spectrum of cancer detection and care. Government recognises a need to improve access to cancer treatment within nonmetropolitan regions (Adams et al 2009). Poorer access to cancer treatment is a major contributor to lower survival rates among people living in non-metropolitan regions. There are two primary reasons for a lack of access, including: a shortage of specialist treatment facilities and health care providers; and a lower quality of treatment and care in non-metropolitan regions. i

7 Contributing to poor access is the long distance people living in non-metropolitan often travel to receive cancer treatment. Hegney et al (2005) examined the experiences of people with cancer who commuted from Toowoomba to Brisbane for radiotherapy treatment. The authors concluded patients experienced many difficulties, including a large travel burden, difficulties with being away from home, family and friends, and an excessive financial burden caused by relocation or travel costs. To highlight the travel burden some people face in accessing cancer treatment, this study calculated the distance from the midpoint of every Statistical Local Area (SLA) 1 to the nearest infusion service and radiotherapy service in Australia. 2 Each SLA covers a smaller geographical area compared to a Federal Electorate Division (FED) 3 and hence enabled greater accuracy in calculating distance. Distance from individual SLAs within a FED (using a best fit method) to the nearest facility was used to derive an average distance for each FED. Results are summarised in Table i to Table iv. Table i: Estimated average distance to cancer-related infusion services, by state/territory All Average Maximum Minimum Metro Nonmetro All Metro Nonmetro All Metro Nonmetro km km km km km km km km km ACT N/A N/A N/A NSW NT Qld SA Tas Vic WA National Source: calculations. Table ii: Estimated average distance to radiotherapy services, by state/territory All Average Maximum Minimum Metro Nonmetro All Metro Nonmetro All Metro Nonmetro km km km km km km km km km ACT N/A N/A N/A NSW NT Qld SLAs are statistical boundaries set by the Australian Bureau of Statistics (ABS) and comprises of a number of Census Collection Districts (CCDs). 2 Using Pitney Bowes Map Info Professional software. 3 FED boundaries are determined by a Redistribution Committee to ensure each FED contains the same number of electors, and may contain a number of SLAs. Continued next page. ii

8 SA Tas Vic WA National Source: calculations. Table iii: Estimated average distance to cancer-related infusion services, by FED Metropolitan Non-metropolitan FED km FED km FED km FED km Australian Capital Territory Canberra 5.9 Fraser 7.4 New South Wales Banks 4.3 Lindsay 3.2 Calare 22.8 Newcastle 4.2 Barton 0.9 Macarthur 12.3 Charlton 12.2 Page 20.6 Bennelong 3.3 Mackellar 9.7 Cowper 44.1 Parkes 39.2 Berowra 15.7 McMahon 5.7 Cunningham 6.4 Paterson 38.6 Blaxland 4.6 Mitchell 2.5 Dobell 6.8 Richmond 21.1 Bradfield North Eden Riverina 27.4 Sydney Monaro Chifley 8.7 Parramatta 2.5 Farrer 39.3 Robertson 7.9 Cook 4.5 Reid 3.6 Gilmore 17.8 Shortland 4.6 Fowler 4.0 Sydney 1.5 Hume 19.0 Throsby 20.0 Grayndler 3.7 Warringah 2.3 Hunter 23.2 Greenway 1.2 Watson 2.4 Lyne 16.8 Hughes 6.2 Wentworth 4.9 Macquarie 32.6 Kingsford Smith 4.8 Werriwa 10.1 New England 22.7 Northern Territory Solomon 7.8 Lingiari Queensland Bonner 9.7 Oxley 6.3 Blair 19.9 Kennedy 95.1 Bowman 20.3 Petrie 5.2 Capricornia 54.8 Leichhardt Brisbane 2.2 Rankin 8.0 Dawson 37.3 Longman 11.4 Dickson 8.0 Ryan 5.9 Fairfax 5.3 Maranoa Fadden 8.2 Fisher 13.9 McPherson 6.6 Forde 17.7 Flynn 38.8 Moncrieff 6.5 Griffith 2.4 Groom 15.9 Wide Bay 18.1 Lilley 4.2 Herbert 6.0 Wright 24.9 Moreton 2.8 Hinkler 16.6 South Australia Adelaide 2.4 Makin 4.3 Barker 23.5 Boothby Port 3.5 Adelaide 5.5 Grey 69.0 Hindmarsh 2.4 Sturt 4.1 Mayo 14.6 Kingston 7.2 Wakefield 14.1 Tasmania Denison 2.3 Bass 11.9 Lyons 25.9 Franklin 21.1 Braddon 19.4 Continued next page. iii

9 Table iii: Estimated average distance to cancer-related infusion services, by FED continued Metropolitan Non-metropolitan FED km FED km FED km FED km Victoria Aston 4.8 Hotham 2.0 Ballarat 12.8 Batman 3.6 Isaacs 6.9 Bendigo 8.0 Bruce 5.4 Jagajaga 5.8 Corangamite 14.9 Calwell 5.8 Kooyong 2.5 Corio 9.4 Casey 15.3 Lalor 7.2 Flinders 15.4 Chisholm 1.3 La Trobe 4.9 Gippsland 22.6 Deakin 1.9 Maribyrnong 5.3 Indi 18.1 Dunkley 3.8 Melbourne 1.1 Mallee 21.6 Gellibrand Melbourne 5.3 Ports 2.3 McEwen 15.2 Goldstein 2.2 Menzies 6.2 McMillan 22.6 Gorton 12.9 Scullin 4.6 Murray 17.9 Higgins 2.6 Wills 1.8 Wannon 17.1 Holt 8.3 Western Australia Brand 25.8 Moore 3.7 Durack Canning 30.0 Pearce 25.6 Forrest 20.0 Cowan 10.1 Perth 3.6 O'Connor 89.9 Curtin 2.5 Stirling 7.5 Fremantle 3.1 Swan 5.8 Hasluck 15.7 Tangney 5.1 Source:. Table iv: Estimated average distance to radiotherapy services, by FED Metropolitan Non-metropolitan FED km FED km FED km FED km Australian Capital Territory Canberra 7.1 Fraser 13.8 New South Wales Banks 4.3 Lindsay 3.3 Calare 62.5 Newcastle 4.2 Barton 0.9 Macarthur 12.3 Charlton 20.3 Page 32.0 Bennelong 3.3 Mackellar 14.2 Cowper 63.1 Parkes Berowra 20.6 McMahon 5.7 Cunningham 11.8 Paterson 45.7 Blaxland 7.8 Mitchell 8.5 Dobell 19.2 Richmond 23.1 Bradfield North Eden Sydney Monaro 94.8 Riverina Chifley 14.0 Parramatta 5.0 Farrer Robertson 13.8 Cook 4.5 Reid 7.7 Gilmore 58.7 Shortland 14.2 Continued next page. iv

10 Table iv: Estimated average distance to radiotherapy services, by FED continued Metropolitan Non-metropolitan FED km FED km FED km FED km Fowler 4.0 Sydney 1.5 Hume 88.1 Throsby 34.5 Grayndler 3.7 Warringah 6.7 Hunter 97.7 Greenway 5.1 Watson 8.4 Lyne 55.1 Hughes 10.0 Wentworth 4.9 Macquarie 36.5 Northern Territory Solomon 7.8 Lingiari Queensland Bonner 12.2 Oxley 12.1 Blair 39.3 Kennedy Bowman 23.6 Petrie 13.5 Capricornia Leichhardt Brisbane 2.5 Rankin 17.4 Dawson Longman 34.9 Dickson 12.6 Ryan 7.0 Fairfax 6.0 Maranoa Fadden 9.5 Fisher 16.5 McPherson 6.9 Forde 26.2 Flynn Moncrieff 6.5 Griffith 2.9 Groom 18.8 Wide Bay 79.5 Lilley 4.6 Herbert 7.9 Wright 30.8 Moreton 7.7 Hinkler South Australia Adelaide 3.9 Makin 4.3 Barker Boothby Port 4.3 Adelaide 5.5 Grey Hindmarsh 4.0 Sturt 4.1 Mayo 44.2 Kingston 15.5 Wakefield 28.2 Tasmania Denison 4.4 Bass 44.3 Lyons 51.0 Franklin 35.5 Braddon Victoria Aston 9.3 Hotham 3.6 Ballarat 21.5 Batman 4.9 Isaacs 14.5 Bendigo 20.0 Bruce 10.6 Jagajaga 5.8 Corangamite 41.2 Calwell 8.2 Kooyong 3.0 Corio 9.4 Casey 29.9 Lalor 21.6 Flinders 32.7 Chisholm 4.9 La Trobe 14.6 Gippsland 77.9 Deakin 4.2 Maribyrnong 5.6 Indi 72.4 Dunkley 6.9 Melbourne 1.2 Mallee Melbourne Gellibrand Ports McEwen Goldstein 5.6 Menzies 6.2 McMillan 56.5 Gorton 13.3 Scullin 7.3 Murray 84.8 Higgins 3.2 Wills 8.4 Wannon Holt 16.8 Western Australia Brand 32.4 Moore 17.6 Durack Canning 70.7 Pearce 59.6 Forrest Cowan 13.2 Perth 3.7 O'Connor Curtin 2.8 Stirling 5.6 Fremantle 8.2 Swan 5.8 Hasluck 18.3 Tangney 9.0 Source:. v

11 Results highlight some key themes regarding access to cancer treatment throughout Australia. There are large variations in average distances across FEDs. For example, the FED with the least average distance required to access infusion services is Barton in NSW, with 0.9 kilometres. The FED with the largest average distance is Lingiari in the Northern Territory, with kilometres. Average distances to cancer-related infusion services and radiotherapy services are larger in non-metropolitan FEDs. For example, for cancer-related infusion services, the average distance among metropolitan FEDs in Western Australia is 6.5 kilometres, while the average distance among its non-metropolitan FEDs is 31.8 kilometres. For radiotherapy services in Western Australia, the average distance among metropolitan FEDs is 20.6 kilometres, while the average distance among its non-metropolitan FEDs is kilometres. This suggests that access to cancer care for people living in nonmetropolitan regions is less compared to people living in metropolitan regions. The average distance to cancer-related infusion services is much less compared to the average distance to radiotherapy services, with disparities greater for non-metropolitan regions. This is because radiotherapy services are primarily located in capital cities or large regional cities. The average distance to cancer-related infusion services and radiotherapy services is generally larger for states/territories with a larger geographical area (e.g., Northern Territory, Western Australia and Queensland). A detailed evaluation of 20 FEDs was also undertaken, where the five post codes with least access to cancer-related infusion services (as measured by the furthest distance) in each FED was determined. Some FEDs have relatively good access to cancer-related infusion services. For example, all postcodes within Newcastle in New South Wales are less than 12 kilometres away from infusion services. Other FEDs are more remote, which means people are a long distance away from cancer-related infusion services. For example, postcode 6799 in Lingiari (Northern Territory) is 2,128.8 kilometres away from the nearest cancer-related infusion service. Given the disparity in cancer outcomes between metropolitan and non-metropolitan regions, it is imperative that federal and state/territory governments continue to improve access to cancer treatment services in non-metropolitan regions. To date, focus has been on developing better coordination of existing cancer treatment services, with services being delivered in large specialist centres but linked to smaller centres. The federal government has invested in Cancer Service Networks (CanNET) to improve coordination of existing cancer services across primary, secondary and tertiary health care professionals (Adams et al 2009). State/territory governments are also implementing their own programs. For example, Victoria has established the Rural/Regional Integrated Cancer Services (RICS) to bring radiation oncology closer to people living in non-metropolitan areas. Access improvements could potentially be made through the delivery of a wider range of cancer-related treatment by primary care physicians. To test whether access to treatment would be improved if offered in a primary rather than secondary care setting, the five vi

12 furthest postcodes from infusion services for each of the 20 selected FEDs were investigated to determine whether that postcode contained a GP. If the postcode did not, the distance that must be travelled to the nearest GP was estimated and compared to the current distance required to receive an infusion. Of the 100 postcodes that are furthest away from infusion services, 62 postcodes contain a GP. If cancer-related treatment could be appropriately delivered through these GPs, on average, cancer patients would save kilometres on travel for care. However, people in some postcodes would experience a much greater reduction in travel distance. For example, postcode 6799 (Cocos (Keeling) Islands) in Lingiari (in the Northern Territory) contains at least one GP, which means any cancer patients living within this postcode could reduce their travel to receive cancer-related treatment by 2,128.8 kilometres. Of the 38 postcodes that do not contain a GP, there is generally a GP close by. If cancerrelated treatment could be appropriately delivered through these GPs, on average cancer patients would save travelling 55.6 kilometres for care. Once again, cancer patients in some postcodes would benefit from using GPs more than others. For example, people in postcode 4871 in Leichhardt in Queensland are expected to reduce their distance by kilometres if they received cancer-related treatment from their nearest GP rather than current infusion service arrangements, which are currently located in Cairns. Although most postcodes with the greatest expected benefit from reduced travel distances are not heavily populated, there are some notable exceptions. For example, postcode 4871 in Leichhardt (Queensland) had a population of 16,344 in the 2006 ABS Census. Similarly, postcode 4306 in Blair (Queensland) had a population of 29,059, and the expected reduction in distance is 53.8 kilometres. Evidence within the literature and from this study suggests some people with breast or prostate cancer travel long distances to receive appropriate cancer care. This imposes significant costs on the patient, and can lead to worse survival outcomes. As GP access is generally better compared to current infusion service providers in non-metropolitan regions, improvements to access for people living in these areas could be made through the delivery of a wider range of cancer-related treatments by primary care physicians. vii

13 1 An overview of cancer This chapter provides a definition of cancer and broad overview of breast and prostate cancer in Australia. It shows that of all cancers (excluding basal and squamous cell carcinomas of the skin), prostate and breast cancer has the greatest incidence and prevalence among males and females respectively, and imposes a large burden of disease on Australians. 1.1 What is cancer? In its most general form, cancer is a class of over 100 diseases characterised by uncontrolled division of cells (i.e. the mutations of genes that encode proteins controlling cell division). These blood cells have the ability to detach from the original cancer site (localised cancer), and then spread to other regions of the body. There are several known cancer risk factors. Some can be modified (e.g., lifestyle risk factors), while others cannot (e.g., genetic risk factors). Common cancer risk factors include: Biomedical factors, including: genetic susceptibility; and hormonal factors in females. Lifestyle factors, including: smoking; alcohol consumption; physical inactivity and obesity; chronic infections; and diet. Environmental factors, including: sunlight; radiation; occupational exposure; and pollution (AIHW 2010). Cancer imposes the greatest burden of disease 4 on Australians, accounting for around 19% of the total burden. Around 50% of males and 33% of females will develop cancer within their lifetime, and 20% will die from cancer before they turn 85 years of age (AIHW 2010). Cancer is the second leading cause of mortality in Australia (behind cardiovascular disease), accounting for 39,884 deaths in 2007 (AIHW 2010). 4 The burden of disease is measured using the disability adjusted life year (DALY). This is a measurement unit that quantifies morbidity and mortality associated with various diseases and injuries (Murray and Acharya 1997). DALY weights are measured on a scale of zero to one, where a zero represents a year of perfect health and a one represents death. Other health states that result from specific diseases or injuries are given a weight between zero and one to reflect the quality of life that is lost due to a particular condition. 8

14 1.2 Prostate and breast cancer Prostate and breast cancer are leading causes of disease burden among Australians, imposing years of poor health and reducing total years of life. Prostate cancer is the second leading cause of disease burden among males (behind lung cancer), and breast cancer is the leading cause of disease burden among females (see Table 1.1). Around 19.1% of the total burden of disease associated with cancer can be attributed to prostate and breast cancer (AIHW 2010). Males Cancer type Table 1.1: Estimated leading causes of the cancer burden of disease DALYs % of cancer burden Females Cancer type DALYs % of cancer burden Lung 56, Breast 61, Prostate 42, Lung 41, Bowel 37, Bowel 30, Melanoma 15,200 5 Ovary 12,900 5 Lymphoma 14,200 5 Pancreas 12,400 5 Other 121, Other 94, Total 287, Total 252, Note: DALY = Disability Adjusted Life Year. Source: AIHW (2010). Of all cancers, prostate and breast cancer are the most prevalent among males and females respectively. In 2007, there were 19,403 new cases of prostate cancer and 12,567 new cases of breast cancer (AIHW 2010). In addition, prostate and breast cancer combined were the second leading causes of cancer death, accounting for 2,938 and 2,680 deaths in 2007 respectively (AIHW 2010). In total, these two types of cancer accounted for 14.1% of all cancer deaths in Australia. Although age is not specifically categorised as a risk factor, breast and prostate cancer primarily affects older people, as shown in Chart 1.1 and Chart 1.2 respectively. These charts show a steep increase in incidence rates and mortality rates for breast and prostate cancer, although the slope increases at a substantially younger age for breast cancer in females compared to prostate cancer. Recently, the incidence of prostate cancer has been increasing. Between 1997 and 2007 the incidence rate increased from 130 cases per 100,000 males to 184 cases per 100,000 males. This increase has been due to alternative prostate specific antigen (PSA) testing (AIHW 2010). The number of new prostate cancer cases continues to increase at an annual growth rate of 5.3% (AIHW 2008a). Although the incidence rate for prostate cancer has been increasing, the mortality rate has declined, from 44 deaths per 100,000 males in 1993 to 31 deaths per 100,000 males in This improvement is due to better treatment (AIHW 2010). 9

15 Chart 1.1: Incidence and mortality rates for breast cancer in females 350 cases per 100,000 people New cases Mortality Source: AIHW (2011a). Chart 1.2: Incidence and mortality rates for prostate cancer cases per 100,000 people New cases Mortality Source: AIHW (2011a). Between 1995 and 2007, the incidence rate of breast cancer decreased from 116 cases per 100,000 females to 109 cases per 100,000 females. However, the number of breast cancer cases continues to increase at an average rate of around 2.2% (AIHW 2009). The mortality rate declined from 31 deaths per 100,000 females in 1994 to 22 deaths per 100,000 females in 2007 (AIHW 2010). Some of the factors contributing to this decline are earlier diagnosis through BreastScreen Australia (established in 1991), and better treatment (AIHW 2010). 10

16 The high burden of prostate and breast cancer means a large amount of health care resources must be allocated to diagnosis and treatment. Although people with cancer use a wide variety of acute and primary health care services, the largest cost is associated with admitted patient hospitalisations related to treatment or palliative care. In , there were 836,906 hospitalisations with a principle diagnosis of cancer. Cancer patients occupied 2.3 million bed days, with an average length of stay of approximately 7.7 days (excluding same day hospitalisations). Patients diagnosed with prostate cancer accounted for 34,289 hospitalisations, while patients diagnosed with breast cancer accounted for 25,119 hospitalisations (see Table 1.2). Between and , hospitalisations with a principal diagnosis of prostate cancer and breast cancer increased by 10.4% and 4.8% respectively (AIHW 2010). Table 1.2: Hospitalisations with a principal diagnosis of cancer, Type Same-day Overnight Total Non-melanoma skin 70,962 14,040 85,002 Unknown primary site 7,267 32,922 40,189 Prostate 16,458 17,831 34,289 Bowel 9,182 21,112 30,294 Breast 6,296 18,823 25,119 Other 515, , ,833 Total 625, , ,906 Source: AIHW (2010). Cancer patients are likely to receive chemotherapy and radiotherapy as part of their treatment regime. Chemotherapy (cancer treatment delivered by intravenous infusion) forms a substantial proportion of total cancer related hospitalisations. For example, in there were 335,353 hospital admissions for chemotherapy (nearly all same day procedures), which accounted for approximately 33% of all cancer related hospitalisations. Of these, 41.3% were undertaken in public hospitals. Between and , hospitalisations for chemotherapy grew by 21,280, or approximately 5% (AIHW 2011). It is important to note that chemotherapy usually involves a course of treatment, requiring individual patients to attend chemotherapy clinics on a regular basis. In addition, some hospitals provide chemotherapy services on a non-admitted basis (i.e., as an outpatient). In there were 123,275 outpatient occasions of service for chemotherapy, where 66% was undertaken in NSW hospitals (AIHW 2011). Most radiotherapy services are located in major hospitals in capital cities and large regional centres. Radiotherapy is generally given on a non-admitted basis, either through a public or private hospital. In there were around 922,000 megavoltage (the main form of radiotherapy used to treat cancer) Medicare Benefit Schedule (MBS) claims (Medicare 2011). Radiotherapy can be particularly burdensome on the patient given the time and intensity associated with treatment. For example, some people may require radiotherapy five days per week over a period of six weeks. On occasions, radiotherapy may be required 11

17 twice per day. This means being close to radiotherapy services is advantageous as it reduces a patient s need to travel long distances or relocate. 12

18 2 A literature review on access to cancer treatment This chapter presents a literature review on issues surrounding access to cancer treatment in Australia. It first presents variations found in cancer epidemiology, focusing on regional variations and the Indigenous population. The chapter also explores access to cancer treatment, including screening, diagnosis, treatment and care. 2.1 Variations in cancer epidemiology Many studies have examined differences in health outcomes between people diagnosed with cancer living in non-metropolitan regions compared to those living in metropolitan areas (Heathcote and Armstrong 2007). These studies have largely focused on the effects of regionality on incidence and mortality rates, suggesting regional variations may be attributed to a combination of factors. Heathcote and Armstrong (2007) note possible reasons for this result, including: more difficult access to cancer treatment due to poor transport links and shortage of healthcare providers in non-metropolitan regions; higher proportion of Indigenous Australians in non-metropolitan regions who are generally more economically disadvantaged than other populations; and a higher proportion of people from lower socioeconomic backgrounds living in nonmetropolitan regions, leading to: differences in cancer knowledge and health behaviours; later tumour stage at diagnosis; issues with affordability of care; and reduced ability to access the full spectrum of cancer detection and care Regional variations Research on regional variations in cancer patterns have largely focused on cancer incidence and mortality rates. According to the Australian Institute of Health and Welfare (AIHW), people living in non-metropolitan regions fare worse than their metropolitan counterparts across a wide spectrum of cancers (AIHW 2008). However, regional variations are not uniform across all cancer types. For example, people living in inner regional areas have higher incidence rates of bowel cancer, melanoma of the skin and prostate cancer. 5 Furthermore, the incidence of breast cancer and lymphoid cancer decreases with remoteness despite higher health risk behaviours and lower socioeconomic status. For example, remote and very remote areas have a 20% lower 5 Remoteness was classified according to the Australian Standard Geographical Classification (ASGC) Remoteness Areas. 13

19 incidence rate of breast cancer compared to major cities between 2003 and 2007 (AIHW 2010). Some reasons for breast cancer include (Access Economics 2007): risk of breast cancer is greater in women who have never had children or have them later in life, which generally relates to urban areas given greater competing demands (e.g., work); breastfeeding can help reduce the risk of breast cancer and it is likely that women in urbanised areas will restrict the period of breastfeeding; and there may be more environmental risk factors (pollutants and toxins) in urban areas. The incidence and mortality associated with prostate and breast cancer by remoteness over is shown in Table 2.1. For prostate cancer, the incidence rate is highest for inner regional areas, while the mortality rate is highest for outer regional areas. For breast cancer, the incidence rate is highest for major cities, while the mortality rate is highest for inner and outer regional areas. Table 2.1: Incidence and mortality of prostate and breast cancer, by remoteness Prostate cancer Breast cancer Incidence Mortality Incidence Mortality Major cities Inner regional Outer regional Remote and very remote Total Note: The rates were age-standardised to the Australian population as at 30 June 2001 and are expressed per 100,000 population. The rates are based on the total number of cases over the 5-year period from Source: AIHW (2010). Survival rates also vary across remoteness. For diagnosed cancers between 1997 and 2004, AIHW (2008) found the following results. One-year and five-year relative survival rates for all cancers decreased as remoteness of residence increased, with significant differences between major cities, inner regional and outer regional. There are significant differences in relative five-year survival for breast and prostate cancer between major cities and outer regional areas. These findings mirror those in other studies. Using recent data, AIHW (2010) found that although the mortality rate for all cancers combined was similar for outer regional areas and remote/very remote areas (207 and 206 deaths per 100,000 respectively), there was a significantly lower mortality rate for major cities (172 deaths per 100,000) between Coory and Baade (2005) also found that the prostate cancer mortality rate for men in rural and regional regions was higher than for men in capital cities (though this was not statistically significant) and that the differences were increasing over time. 14

20 2.1.2 Cancer among Indigenous Australians Condon et al (2003) notes there are differences in cancer incidence and mortality between Indigenous and non-indigenous Australians. While Indigenous Australians have a higher incidence rate for lung, liver and cervical cancer, they have a lower incidence rate for breast and prostate cancer (68.0 versus per 100,000 people for breast cancer and 61.1 versus per 100,000 people for prostate cancer) (AIHW 2010). However, mortality rates for breast and all cancers are higher compared to the non-indigenous population. (AIHW 2010). In addition, for prostate and breast cancer, the mortality rate ratio between Indigenous and non-indigenous Australians is higher than the incidence rate ratio. This suggests Indigenous Australians experience poorer breast and prostate cancer outcomes despite having lower incidence rates. Even after taking into account the stage of cancer at diagnosis, cancer treatment and higher rates of comorbidities in Indigenous Australians, the likelihood of death from cancer is still about 30% higher for the Indigenous population (Valery et al 2006). The reasons underlying the differences in cancer outcomes between Indigenous and non-indigenous people are multifaceted and require further research (Roder 2007; Valery et al 2006; WHGNE 2010). One possible reason for poorer cancer outcomes for Indigenous Australians is their higher rate of residence in non-metropolitan regions. Chart 2.1 shows that there is a larger proportion of the Indigenous population who live in remote areas compared to the non- Indigenous population. Together with the fact that Indigenous Australians generally have poorer health outcomes due to a range of socioeconomic dimensions (AIHW 2008), this may be contributing to significant differences in cancer outcomes. Valery et al (2006) identified that the stage of cancer at diagnosis was significantly different between Indigenous and non-indigenous patients, contributing to differences in treatment and cancer outcomes. There is also a higher prevalence of comorbidities among Indigenous patients including acute coronary syndrome, diabetes, respiratory disease and chronic renal disease (Valery et al 2006). According to Valery et al (2006), Indigenous patients were 1.7 times more likely to have three comorbidities or more compared with non-indigenous patients. Another reason for poorer cancer outcomes is less access to cancer treatment (Coory et al 2008). Chart 2.2 shows that a lower proportion of Indigenous Australians received chemotherapy, radiotherapy and surgery compared to the non-indigenous population. Disadvantage in treatment utilisation for Indigenous Australians remained even after adjusting for cancer type, stage at diagnosis and comorbidities (Coory et al 2008). 15

21 Chart 2.1: Proportion of resident population by remoteness areas % Major Cities Inner Regional Outer regional Remote Very Remote Indigenous Non-Indigenous Source: ABS (2006) Chart 2.2: Proportion of cancer patients who receive treatment, by type % Chemotherapy Radiotherapy Surgery Any active treatment Indigenous Non-Indigenous Source: ABS (2006). The absolute differences in survival after diagnosis for Indigenous people with cancer are greatest for cancers with the highest survival in non-indigenous people (Condon 2004). These are cancers that have a high probability of cure and effective treatment if diagnosed early, such as breast cancer. Condon (2004) also noted that some of the most common cancers (such as lung and cervical cancer) among Indigenous people are preventable by reduced tobacco use, increased use of Pap tests, hepatitis B immunisation, and reduced 16

22 alcohol use. In addition, Indigenous patients with breast cancer are more likely to be diagnosed with localised disease than the non-indigenous population, but they are less likely to survive (Heathcote and Armstrong 2007; Roder 2007). Valery et al (2006) and Condon et al (2006) found that Indigenous patients are less likely to receive treatment for cancer, and were more likely to refuse when offered treatment. This is consistent with Coory et al (2008), which found that Indigenous Australians received much less active cancer treatment when diagnosed. Heathcote and Armstrong (2007) suggested that language and cultural beliefs about cancer and treatment impacted on their decisions to receive treatment. WHGNE (2010) found that Indigenous women regard cancer with a high level of fear and associate the disease with a fatal prognosis. In addition, they often feel intimidated due to communication difficulties and hence many Indigenous women feel uncomfortable in accessing mainstream health services (WHGNE 2010). 2.2 Access to cancer treatment When stage at diagnosis, socioeconomic disadvantage and Indigenous identification are accounted for, poorer survival rates appear to persist in non-metropolitan regions. This suggests that one reason for differences in cancer outcomes for people in nonmetropolitan regions is reduced access to cancer treatment. This can be due to (Heathcote and Armstrong 2007): geographic isolation; inadequate transport links; differences in cancer screening and diagnostic services; later stage of cancer at diagnosis; shortage of healthcare providers; and differences in attitudes towards cancer and its management Cancer screening and diagnosis Lack of access to cancer screening may be contributing to higher mortality rates for people living in remote areas. Coory and Baade (2005) note that while prostate cancer screening is widespread across Australia, it is less common in non-metropolitan regions compared to capital cities. Lack of access to screening and early diagnosis may be masking more aggressive cancers in non-metropolitan regions, possibly partly explaining the higher mortality rates. However, Coory and Baade (2005) suggest that screening and diagnosis is not the only factor contributing to higher mortality rates in non-metropolitan regions. According to Jong et al (2004), cancer stages at diagnosis differ by geographic remoteness. People outside the highly accessible areas were more likely to have non-localised cancers, including cancers of the prostate. When stage of cancer at diagnosis was accounted for, men in remote areas were still at increased risk of death from prostate cancer while women remained with an increased risk of death from cervical cancer. From a series of in-depth, semi-structured interviews with 18 participants in three rural Western Australian health regions, McConigley et al (2010) found that participants often 17

23 delayed screening and therefore were less likely to receive an early diagnosis. Reasons for the delays include: participants did not recognise symptoms of cancer; GPs often did not recognise symptoms, or did not give an immediate referral for testing; and some participants waited until symptoms were acute so they could enter the emergency department and have their symptoms checked immediately Access to cancer care Another possible reason for higher mortality in non-metropolitan regions may be differences in cancer management (Coory and Baade 2005). Poorer access to cancer treatment is a major contributor to lower survival rates among people living in nonmetropolitan regions. There are two primary reasons for a lack of access, including: a shortage of specialist treatment facilities and health care providers; and a lower quality of treatment and care in non-metropolitan regions compared to metropolitan areas. Shortage of specialist treatment facilities and health care providers In 2005, the Clinical Oncological Society of Australia (COSA) conducted a comprehensive national survey of regional hospitals administering chemotherapy to map oncology services in non-metropolitan regions around Australia. Of the 761 public hospitals and 543 private hospitals in Australia in , only 159 in non-metropolitan regions administered chemotherapy (COSA 2006). As a result, people from rural areas who may be prescribed with chemotherapy (or even radiotherapy and surgery) may be disadvantaged in terms of accessibility and availability of treatment facilities. Often, people have to travel long distances to capital cities for cancer treatment. Hegney et al (2005) examined the experiences of people with cancer who commuted from Toowoomba to Brisbane for radiotherapy treatment. The authors concluded there were many difficulties associated with people having to travel for radiotherapy. The burden of travel for cancer treatment is large. This is particularly the case for people who are not emotionally or financially prepared to relocate to a capital city and thus have to commute on a daily basis for treatment. For those who do relocate, there are difficulties associated with being away from home, family and friends during their treatment period. There is an excessive financial burden caused by relocation or having to travel for treatment, especially for people who are not able to continue work during their treatment period. These findings are consistent with a similar study by McConigley et al (2010) on the treatment decisions of cancer patients in rural Western Australia. People were not offered options to have cancer care closer to home, while some were required to receive treatment in a metropolitan area due to the lack of radiotherapy services in rural areas. Coory and Baade (2005) and COSA (2006) found accessibility to specialist surgical oncology services problematic in non-metropolitan regions. In the COSA (2006) survey, there were 18

24 no surgical oncologists in remote and very remote areas and general and other surgeons provided the majority of oncology surgery in rural areas. This is consistent with Coory and Baade (2005), which found lower rates of radical prostatectomy and prostate cancer screening for men in non-metropolitan regions compared to those in capital cities. Even though non-metropolitan hospitals administering chemotherapy offer access to allied healthcare services such as multidisciplinary clinics and psychosocial services, long waiting lists and few services dedicated to oncology make it difficult for patients to obtain additional support during their course of treatment. In particular, the COSA survey found a big gap in physical rehabilitation such as physiotherapy and occupational therapy services (COSA 2006). Lower quality of treatment and care Not only is there a shortage of treatment facilities and health care providers for people with cancer in non-metropolitan regions, the treatment they are able to access is generally of lower quality. Much of the differences in treatment quality stems from a qualified workforce shortage in non-metropolitan regions. The COSA survey found that, of the 157 non-metropolitan hospitals administering chemotherapy that responded, only 21% had a resident medical oncology service, with availability of medical oncologists decreasing as remoteness increased (COSA 2006). For non-metropolitan hospitals administering chemotherapy in very remote areas, there were no medical oncologists (whether resident or visiting). As a result, chemotherapy was often not referred by medical oncologists in more remote areas but by other doctors and general practitioners (COSA 2006). In addition, the percentage of chemotherapy that is administered by a chemotherapytrained nurse decreased significantly for remote and very remote areas compared to major cities, inner regional and outer regional areas (COSA 2006). In these more remote areas, other trained nurses or GPs are likely to administer chemotherapy for cancer patients. Given the narrow band of safe and effective doses for chemotherapy drugs, it is extremely important they are administered precisely by trained health professionals (COSA 2006). There is also a difference in the quality of surgery between remote and metropolitan areas. For example, Hall et al (2004) and Kricker et al (2001) found that women with breast cancer residing in rural areas were less likely to receive conservative treatment and more likely to have mastectomies compared to women living in metropolitan areas. Mitchell et al (2006) analysed linked data in Western Australia and found that breast cancer treatment in rural areas was sub-optimal for open biopsies with frozen section, adjuvant radiotherapy and hormonal therapy. 2.3 Improving access to cancer treatment Recent studies have explored ways to improve access to cancer treatment in order to achieve better outcomes for people living in non-metropolitan regions. In general, there are no formal models of cancer service delivery in non-metropolitan regions drafted in any government policy and planning documents, but state/territory governments are beginning to implement coordinated and networked systems where services to non-metropolitan regions can be formalised (Adams et al 2009). 19

25 According to the Cancer in the Bush report, there were eight areas that needed to be improved to enhance oncology services in non-metropolitan regions (Goldstein and Underhill 2007). Transportation and the need to remove inequities in the current Isolated Patient Travel and Accommodation Assistance Scheme arrangements. Currently, Patient Access and Travel Schemes (PATS) are problematic due to variations across states/territories and restrictive and unclear eligibility rules (COSA et al 2003). Improved patient support, including the provision of breast cancer nurses nationally and a cancer nurse demonstration project. Training to be nationally coordinated and funded. Workforce planning for disciplines covering the special needs of rural areas. COSA et al (2003) suggested that to address the workforce shortage issue in non-metropolitan regions, there needs to be more professional incentives to undertake training in nonmetropolitan settings rather than in major centres. Networks and the development of national accreditation, and the development of a regional cancer demonstration project. Further research into comparative outcomes in survival, access, psychological support and quality of life in rural and urban areas. Reimbursement for item numbers for rural services and tele-oncology. Addressing issues of national priority such as make specific cancer drugs available on the Pharmaceutical Benefits Scheme. Goldstein and Underhill (2007) indicated that while there has been some progress made to these issues, there remains much to be done for rural access to oncology services to improve. 20