- Email: [email protected]
Importance of accessible cancer care
Transfusion and Apheresis Science 49 (2013) 139–143
Contents lists available at ScienceDirect
Transfusion and Apheresis Science journal homepage: www.elsevier.com/locate/transci
Review
Importance of accessible cancer care Pamela Skrabek ⇑ Department of Medical Oncology and Haematology, CancerCare Manitoba, Canada Department of Community Health Sciences, University of Manitoba, Canada
a r t i c l e
i n f o
a b s t r a c t Accessibility is a fundamental principle of government run health systems. Despite this, many factors impair access to care including geography, language, socioeconomic status and gender. Waiting for health care is a barrier to access that can result in significant anxiety and stress, deterioration in functional status and loss of income. Prompt access to diagnosis and treatment are key requirements to improving survival and quality of life for patients with cancer. This review will focus on studies, programs and policies aimed at improving access to care, applicability to patients with lymphoma, and potential impact. There is a growing burden on health care systems due to increasing cancer incidence and escalating health expenditures. Accordingly, initiatives and programs must be evaluated for effectiveness and efficiency. Ó 2013 Elsevier Ltd. All rights reserved.
Keywords: Access Cancer Disparity
Contents 1. 2. 3. 4. 5. 6. 7. 8. 9.
Introduction . . . . . . . . . . . . . . . . Importance of improving access Timely access to care . . . . . . . . . Geography. . . . . . . . . . . . . . . . . . Socioeconomic status . . . . . . . . . Ethnicity . . . . . . . . . . . . . . . . . . . Access to end of life care . . . . . . Challenges ahead . . . . . . . . . . . . Future directions . . . . . . . . . . . . References. . . . . . . . . . . . . . . . . .
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1. Introduction Accessibility and universal coverage are key principles of the Canada Health Act [1]. Despite this, millions of Canadians have reported difficulties accessing medical care [2]. Access to health care involves factors that either facilitate ⇑ Address: Department of Medical Oncology and Haematology, CancerCare Manitoba, Canada. Tel.: +1 204 787 2368. E-mail address: [email protected] 1473-0502/$ - see front matter Ó 2013 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.transci.2013.07.015
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or impede the process of an individual seeking or receiving care. These can include geography, language, cost and gender [3]. Length of wait times is often cited as a reason for unmet health needs [3]. Waiting for health care is a barrier to access that can result in significant anxiety and stress, deterioration in functional status and loss of income [2,3]. Effort must be made to improve efficiency and effectiveness of the health system overall, as wait times are merely the symptom of a larger problem [4]. Effectiveness refers to the benefit of a program or intervention in the real
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world setting whereas efficacy is measured in a clinical trial or under ideal conditions [5]. Efficiency is a measure of integration of health outcomes with consideration of resource use and cost [5]. The incidence of cancer is mounting due to an aging population combined with population growth [6]. With more cases diagnosed and improvements in survival there is an increased burden on health services. Even greater challenges face developing countries where resources and infrastructure are insufficient to cope with the complexity and increasing burden of malignancies [7]. In this paper, discussion regarding inequalities in access for cancer patients will be limited to high-income countries with a universal health system, highlighting Canada. Even after adjustment for disease related or other factors there is a significant influence of place of residence, socioeconomic status (SES), age and ethnicity on access to cancer services [8]. Improvement in availability of palliative care and end of life services is needed urgently [9]. Initiatives that could improve access will be reviewed. When literature is available, focus will be placed on lymphoma, one of the most common cancers and causes of cancer related death in Canada [6]. Inequality in access to health care and services is not unique to this diagnosis. The challenges in addressing this problem, most importantly rapidly increasing expenditures, face many health programs worldwide. 2. Importance of improving access The International Cancer Benchmarking partnership found variability in survival between and within similar health systems is largely related to access to effective care [10]. This evidence has led to adaption of national cancer strategies including the Canadian Partnership Against Cancer (CPAC) [10]. Disparity in health status is not random, with a predictable gradient due to geographical residence, SES, gender and ethnicity [11]. Identifying and reducing disparity in access will improve the health of the population overall and reduce demands on the health system [11]. There are significant challenges with no simple answers regarding best approach to improving outcomes and respecting patient needs in a way that is equitable and financially sustainable [12]. However, investment in delivery of the most effective interventions is crucial as the burden of cancer is immense, both in terms of lives lost and economic effect of premature death and loss of productivity (globally estimated to be $895 billion) [12]. 3. Timely access to care Wait time is defined as the length of time an individual spends waiting for a diagnostic test, surgery or appointment [1]. The need to address wait times as a barrier to access was identified as paramount to maintenance of a publically administered health system in Canada and was forefront in the 2004 ‘‘10-year plan to Strengthen Health Care’’ [1,4]. There are other reasons timely access to care is important. First, while waiting for a procedure, patients may deteriorate clinically, which could impact outcome, with some evidence of this in breast and lung cancer [13]. It has been insufficiently explored as to whether delay
in diagnosis or treatment influences survival of patients with lymphoma [14]. Importantly, longer delays increase patient distress [15]. Also, delays create bottlenecks in the system contributing to inefficiencies with significant economic cost to patients and the health system [16]. Examination of factors that influence delay could identify bias or access problems in our system. For example, patients with a higher level of education have been found to have a shorter delay between suspicion of cancer and specialist care [15]. In a British national survey the most important sociodemographic factor associated with diagnostic delay for Non-Hodgkin Lymphoma (NHL) was younger age [17]. It would be expected that subtype of lymphoma should influence delay. Aggressive subtypes are more likely to be referred urgently. In the case of Diffuse Large B-cell Lymphoma (DLBCL) this is associated with reduced wait time and shorter time to treatment [18]. Yet studies have demonstrated long diagnostic and treatment delays in Hodgkin Lymphoma, an equally aggressive lymphoma with a high cure rate [18,19]. Screening programs can bypass delays shortening the overall patient pathway [13]. There are no recommended screening tests for many cancers including lymphoma. Lymph node diagnostic clinics that accept referrals directly from primary care have been shown to reduce delay, and improve satisfaction of patients and general practitioners (GP) [20]. Centralized, electronic real-time registries could supply information to patients so that they know the length of time until they will be seen [1]. These could be used to identify and target specific regions or populations that are consistent outliers for wait times. Such registries also facilitate confirmation of priority, fairness and appropriateness of consultation or service [1]. Elimination of wait lists is impractical as this is unlikely to be an effective use of resources. Canadian oncology wait time initiatives to date have focused on time from seeing a specialist to delivery of radiation therapy [21]. Despite heavy investments, success is tempered by ongoing geographical variation, both within and between provinces [21]. The patient’s experience is much longer as it also includes wait to see primary care and completion of diagnostic investigations, followed by time to specialist appointment [21]. In 2011 a $40 million initiative to improve the cancer journey in Manitoba (MB, a Canadian province) was announced [22]. The strategy is based on a model created in the United Kingdom (UK) with a goal of reducing time from suspicion of cancer to treatment to two months. This is an enormous task, especially given lack of knowledge regarding current status. To influence timely diagnosis GPs will need to be involved. However, there are at least four million Canadians without primary care, with residents in remote, rural areas most unlikely to have a GP due to lack of availability [23]. The UK has reduced wait times, however, without clear evaluation of outcomes and uncertain applicability to other health care systems, it is difficult predict the efficiency of this strategy [24]. 4. Geography Improving access to care must also address disparities related to income, geography, education, age, gender and
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ethnicity. All have been demonstrated to affect receipt and timeliness of cancer services in Canada [8]. Geographical challenges to accessing cancer care exist in many jurisdictions. In Canada, living further from a cancer center has been associated with lower access to chemotherapy, radiation, and palliative care [8]. In MB, a province with 1.2 million residents, several programs have been developed to address geographical barriers. Community Cancer Programs (CCPs), in locations outside of the capital city enable cancer treatment and services closer to home [25]. In just one year, over nine million kilometers of travel were saved for patients and their family, with administration of 6395 intravenous treatments outside of the main cancer center [25]. Uniting Primary Care and Oncology Network (UPCON) seeks to address communication and collaboration between primary care and oncology providers by allowing access to cancer agency electronic records [25]. Telecommunication links between community sites and academic oncology centers enable communication, counseling and follow up without the need to travel long distances. These programs have been shown to be cost saving and are feasible even in complex patients, such as the post allogeneic stem cell transplant population [26,27].
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advanced at diagnosis in African Americans [33]. Yet, even after controlling for important factors such as comorbidity, fewer African American patients receive chemotherapy or radiation than Caucasians and other ethnic populations [33]. This population, as is often the case with ethnic minorities, was more likely to have lower income and education which was independently associated with survival [33]. However, an important finding from this study is that adjustment for stage, treatment received, and SES resulted in no ethnic variation in survival [33]. This means that provision of access to effective treatments could address disparities in survival. In Canada, upward trends in cancer incidence and mortality are more pronounced in Aboriginal populations (the largest group being First Nations) [34]. There is later diagnosis, with more advanced stage disease, and lower participation in screening programs observed in this group [30]. A complex combination of social determinants and differences in cancer risk factor profiles to must be taken into consideration [34]. Research and cancer programs (including training of care providers in remote locations) to address disparity in access to diagnosis and treatment, as well as other unique needs of this patient population, are underway [34].
5. Socioeconomic status SES is a composite of income, education level and employment status [11]. Longer wait times for cancer diagnosis and treatment and decreased utilization of systemic therapies have been consistently reported in patients with lower SES [8]. A cohort study in Denmark of patients with NHL revealed that patients with less education were more likely to have advanced disease (IPI P2, poor performance status, stage 3 or 4 disease) which was hypothesized to be due to delays in receiving appropriate care [28]. Furthermore, radiation therapy was less likely to be given to patients with lower SES and there was a 30% higher mortality related to SES, even when adjusted for confounders [29]. It is recognized that some discrepancy in treatment uptake could be influenced by patient choice [8]. It may be that financial concerns, cultural differences and language barriers influence decisions. Additionally, patients with lower SES or other vulnerable populations often lack an advocate for access to cancer services [8]. Patient navigators are being increasingly used in Canadian cancer programs [30]. Navigators act to facilitate access to care, take on the role of patient advocacy and addressing cultural and language barriers, with evidence of fostering trust and decreasing anxiety [31]. They can assist with financial barriers including cost of childcare and transportation, provide assistance with paperwork and insurance [31]. There is a growing base of evidence to support clinical effectiveness of patient navigators. In breast cancer these programs are associated with improved screening, adherence to follow up and five year survival [32]. At present, literature evaluating cost effectiveness of navigators is scarce. 6. Ethnicity A large cohort study of Medicare insured patients (P65 years) in the United States found NHL to be more
7. Access to end of life care End of life care is a component of palliative care, services and treatment focus on symptoms and quality of life when cancer can no longer be controlled [9]. There are over 75,000 deaths per year in Canada as a result of cancer with nearly one in two newly diagnosed patients expected to die within five years [6]. Despite this, end of life care is not well integrated into cancer programs [30]. Older patients and men are less likely to receive palliative care [8]. Patients have inadequate access to home based palliative care services in Canada. Studies show that most would prefer to be at home, instead over 55% die in hospital [9]. Frequently, individuals are in acute care units rather than those dedicated to palliative care, this affects the quality of care received and is more costly than alternatives. Nearly three quarters of cancer related expenditures are near the end of life, with the largest expenditure being hospitalization [9]. Toxic treatments and diagnostics are overused in many patients during this time [12]. Improved awareness of patient wishes for end of life care is important and palliative care referrals should be considered earlier in a patient’s disease course [9]. Nonetheless, infrastructure remains a problem that requires attention. A lower proportion of hospital deaths in other countries is likely due to better availability of hospice type or home based palliative care [9]. One innovative tool that is accessible even in remote settings is Canadian Virtual Hospice (www. virtualhospice.ca). Patients, families and health care workers can obtain information on a broad range of topics and use an interactive tool to access a team of professionals with experience in palliative care. This initiative went online in 2004, with over 30,000 visits per month within four years virtual consultations have been provided to thousands [35]. With a high user satisfaction
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rating and a relatively modest operating budget of $600,000 this service is patient centered and efficient [35]. Improving access to palliative and end of life care is necessary for alleviating pain and suffering as well as caregiver burden. A more integrated approach that aims to decrease hospitalization in acute medical beds near the end of life is likely to result in cost savings in the long term [9]. End of life care should be highly prioritized as cancer is the leading cause of death in Canada [9]. 8. Challenges ahead Sustainability is an assurance that sufficient resources are available in the long term for timely, quality health services for all [1]. The ratio of health spending to gross domestic product, a measure of a Nation’s economy, has been increasing since the 1970s in most Organization for Economic Cooperation and Development (OECD) countries including Canada [36]. Despite variations in overall expenditures and funding structure there is considerable consistency in Europe, Canada, Australia and the United States with between 4–7% of health expenditures on cancer care [12]. There is no clear relationship between overall expenditures and outcomes [12]. In Canada 30% of health expenditures come from the private sector, largely from private insurance and out-ofpocket payments [37]. Adjusted for inflation, costs in the private sectors are actually growing at a greater rate than public sector expenditures [37]. Many OECD countries have sought to shift financial burden from the public sector with increasing privatization [37]. This does not decrease total costs; in fact plenty of evidence suggests that the opposite is true [37]. Increasing the proportion of services available through the private sector would benefit those with higher incomes, resulting in greater health disparities. Escalating expenditures are due to a combination of factors including technology, increased resource utilization and health-inflation in excess of general inflation rates [38]. Also, there are more patients and more is spent on each patient [12]. Aging populations are often blamed, but this only accounts for 0.8% of overall increase in expenses annually, and service utilization and expenditures correlate better to chronic disease than age [38]. Advances in technology in oncology contribute significantly to rising costs, though many advances will result in more effective and sometimes more efficient care with fewer complications [12]. A substantial portion of costs could be avoided through prevention, earlier detection and more effective treatment strategies [12]. 9. Future directions In the context of rising health care costs, utilization of long-term strategies to improve access aside from increasing resources is essential [39]. A systematic literature search revealed only 51 studies in the area of inequality to cancer service access in Canada, further research is needed [8]. Information sharing, as with the online national resource www.cancerview.net, used by thousands of unique visitors monthly, is important to reduce duplication
and share innovative initiatives [30]. Methods to reduce or contain costs include investment in information technology, changes in provider compensation or incentives, restructuring clinical decision making, increased efficiency of service delivery, and cost-effectiveness analyses prior to new spending [40]. For example, a project utilizing computerized clinical decision support integrated into an order entry system for diagnostic imaging found that 10–20% of images requested were not indicated, which could result in cost savings of $220 million per year [41]. Quality of care and appropriateness must be strengthened. Methods to confirm adherence to guidelines could decrease unnecessary referrals, diagnostic procedures or treatment [4]. In a Lancet Oncology commission regarding the challenge of delivery of affordable cancer care inefficiency and overutilization was highlighted with a framework to approach these problems. Wide scale system performance assessment, as initiated by the CPAC, to evaluate effectiveness of cancer control programs and flexible tools to predict efficiency of dollars spent are essential [30]. While cancer expenditures are increasing this should not be considered a barrier to improving access. It is estimated that billions of dollars could be saved globally with investment in cancer prevention and better access to treatment [7]. The effects of geography, ethnicity, age and SES on access to cancer diagnostics, treatment and end of life care should be recognized with prioritization of evidence-based solutions. Wait times should not be the main focus, however, if cancer services cannot be accessed in timely manner effectiveness could be compromised [13]. More attention to primary care, prevention and reduction in health inequalities will decrease services required, resulting in shorter wait lists and cost savings [40]. This is especially important in groups with growing health disparities in cancer like First Nations in Canada.
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[28] Frederiksen BL et al. Socioeconomic inequalities in prognostic markers of non-Hodgkin lymphoma: analysis of a national clinical database. Euro J Cancer 2011;47(6):910–7. [29] Frederiksen BL et al. Socioeconomic position, treatment, and survival of non-Hodgkin lymphoma in Denmark–A nationwide study. Br J Cancer 2012;106(5):988–95. [30] Canadian Partnership Against Cancer. Partnership makes the difference: impact, report, 2010. [31] Natale-Pereira A et al. The role of patient navigators in eliminating health disparities. Cancer 2011;117(15 Suppl):3543–52. [32] Moy B, Chabner BA. Patient navigator programs, cancer disparities, and the patient protection and affordable care act. Oncologist 2011;16(7):926–9. [33] Wang M et al. Ethnic variations in diagnosis, treatment, socioeconomic status, and survival in a large population-based cohort of elderly patients with non-Hodgkin lymphoma. Cancer 2008;113(11):3231–41. [34] Elias B et al. The burden of cancer risk in Canada’s indigenous population: a comparative study of known risks in a Canadian region. Int J Gen Med 2011;4:699–709. [35] Canadian Virtual Hospice. 1000 Questions news release and facts sheet, 2009 [cited 2012 Web Page]. [36] Dodge D, Dion R. The chronic healthcare spending disease: a macro diagnosis and prognosis. In: commentary the health papers, C.D. Howe Institute: 2011. [37] Canadian Institute for Health Information, Exploring the 70/30 split: How Canada’s Health System Is Financed. Ottawa (ON): CIHI; 2005. [38] Canadian Institute for Health Information. Health care cost drivers: the facts, Ottawa, ON; 2011. [39] Health Council of Canada, health care renewal in Canada: clearing the road to quality. Toronto, (ON): Health Canada; 2006. [40] Dionne F et al. How to control the costs of health care services–an inventory of strategic options. Healthc Manag Forum/Can Coll Health Serv Execut 2009;22(4):23–30. [41] Wait time alliance. leading practices: the Canadian association of radiologists experience in increasing appropriateness in imaging through computerized clinical decision support. report..
Contents lists available at ScienceDirect
Transfusion and Apheresis Science journal homepage: www.elsevier.com/locate/transci
Review
Importance of accessible cancer care Pamela Skrabek ⇑ Department of Medical Oncology and Haematology, CancerCare Manitoba, Canada Department of Community Health Sciences, University of Manitoba, Canada
a r t i c l e
i n f o
a b s t r a c t Accessibility is a fundamental principle of government run health systems. Despite this, many factors impair access to care including geography, language, socioeconomic status and gender. Waiting for health care is a barrier to access that can result in significant anxiety and stress, deterioration in functional status and loss of income. Prompt access to diagnosis and treatment are key requirements to improving survival and quality of life for patients with cancer. This review will focus on studies, programs and policies aimed at improving access to care, applicability to patients with lymphoma, and potential impact. There is a growing burden on health care systems due to increasing cancer incidence and escalating health expenditures. Accordingly, initiatives and programs must be evaluated for effectiveness and efficiency. Ó 2013 Elsevier Ltd. All rights reserved.
Keywords: Access Cancer Disparity
Contents 1. 2. 3. 4. 5. 6. 7. 8. 9.
Introduction . . . . . . . . . . . . . . . . Importance of improving access Timely access to care . . . . . . . . . Geography. . . . . . . . . . . . . . . . . . Socioeconomic status . . . . . . . . . Ethnicity . . . . . . . . . . . . . . . . . . . Access to end of life care . . . . . . Challenges ahead . . . . . . . . . . . . Future directions . . . . . . . . . . . . References. . . . . . . . . . . . . . . . . .
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1. Introduction Accessibility and universal coverage are key principles of the Canada Health Act [1]. Despite this, millions of Canadians have reported difficulties accessing medical care [2]. Access to health care involves factors that either facilitate ⇑ Address: Department of Medical Oncology and Haematology, CancerCare Manitoba, Canada. Tel.: +1 204 787 2368. E-mail address: [email protected] 1473-0502/$ - see front matter Ó 2013 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.transci.2013.07.015
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or impede the process of an individual seeking or receiving care. These can include geography, language, cost and gender [3]. Length of wait times is often cited as a reason for unmet health needs [3]. Waiting for health care is a barrier to access that can result in significant anxiety and stress, deterioration in functional status and loss of income [2,3]. Effort must be made to improve efficiency and effectiveness of the health system overall, as wait times are merely the symptom of a larger problem [4]. Effectiveness refers to the benefit of a program or intervention in the real
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world setting whereas efficacy is measured in a clinical trial or under ideal conditions [5]. Efficiency is a measure of integration of health outcomes with consideration of resource use and cost [5]. The incidence of cancer is mounting due to an aging population combined with population growth [6]. With more cases diagnosed and improvements in survival there is an increased burden on health services. Even greater challenges face developing countries where resources and infrastructure are insufficient to cope with the complexity and increasing burden of malignancies [7]. In this paper, discussion regarding inequalities in access for cancer patients will be limited to high-income countries with a universal health system, highlighting Canada. Even after adjustment for disease related or other factors there is a significant influence of place of residence, socioeconomic status (SES), age and ethnicity on access to cancer services [8]. Improvement in availability of palliative care and end of life services is needed urgently [9]. Initiatives that could improve access will be reviewed. When literature is available, focus will be placed on lymphoma, one of the most common cancers and causes of cancer related death in Canada [6]. Inequality in access to health care and services is not unique to this diagnosis. The challenges in addressing this problem, most importantly rapidly increasing expenditures, face many health programs worldwide. 2. Importance of improving access The International Cancer Benchmarking partnership found variability in survival between and within similar health systems is largely related to access to effective care [10]. This evidence has led to adaption of national cancer strategies including the Canadian Partnership Against Cancer (CPAC) [10]. Disparity in health status is not random, with a predictable gradient due to geographical residence, SES, gender and ethnicity [11]. Identifying and reducing disparity in access will improve the health of the population overall and reduce demands on the health system [11]. There are significant challenges with no simple answers regarding best approach to improving outcomes and respecting patient needs in a way that is equitable and financially sustainable [12]. However, investment in delivery of the most effective interventions is crucial as the burden of cancer is immense, both in terms of lives lost and economic effect of premature death and loss of productivity (globally estimated to be $895 billion) [12]. 3. Timely access to care Wait time is defined as the length of time an individual spends waiting for a diagnostic test, surgery or appointment [1]. The need to address wait times as a barrier to access was identified as paramount to maintenance of a publically administered health system in Canada and was forefront in the 2004 ‘‘10-year plan to Strengthen Health Care’’ [1,4]. There are other reasons timely access to care is important. First, while waiting for a procedure, patients may deteriorate clinically, which could impact outcome, with some evidence of this in breast and lung cancer [13]. It has been insufficiently explored as to whether delay
in diagnosis or treatment influences survival of patients with lymphoma [14]. Importantly, longer delays increase patient distress [15]. Also, delays create bottlenecks in the system contributing to inefficiencies with significant economic cost to patients and the health system [16]. Examination of factors that influence delay could identify bias or access problems in our system. For example, patients with a higher level of education have been found to have a shorter delay between suspicion of cancer and specialist care [15]. In a British national survey the most important sociodemographic factor associated with diagnostic delay for Non-Hodgkin Lymphoma (NHL) was younger age [17]. It would be expected that subtype of lymphoma should influence delay. Aggressive subtypes are more likely to be referred urgently. In the case of Diffuse Large B-cell Lymphoma (DLBCL) this is associated with reduced wait time and shorter time to treatment [18]. Yet studies have demonstrated long diagnostic and treatment delays in Hodgkin Lymphoma, an equally aggressive lymphoma with a high cure rate [18,19]. Screening programs can bypass delays shortening the overall patient pathway [13]. There are no recommended screening tests for many cancers including lymphoma. Lymph node diagnostic clinics that accept referrals directly from primary care have been shown to reduce delay, and improve satisfaction of patients and general practitioners (GP) [20]. Centralized, electronic real-time registries could supply information to patients so that they know the length of time until they will be seen [1]. These could be used to identify and target specific regions or populations that are consistent outliers for wait times. Such registries also facilitate confirmation of priority, fairness and appropriateness of consultation or service [1]. Elimination of wait lists is impractical as this is unlikely to be an effective use of resources. Canadian oncology wait time initiatives to date have focused on time from seeing a specialist to delivery of radiation therapy [21]. Despite heavy investments, success is tempered by ongoing geographical variation, both within and between provinces [21]. The patient’s experience is much longer as it also includes wait to see primary care and completion of diagnostic investigations, followed by time to specialist appointment [21]. In 2011 a $40 million initiative to improve the cancer journey in Manitoba (MB, a Canadian province) was announced [22]. The strategy is based on a model created in the United Kingdom (UK) with a goal of reducing time from suspicion of cancer to treatment to two months. This is an enormous task, especially given lack of knowledge regarding current status. To influence timely diagnosis GPs will need to be involved. However, there are at least four million Canadians without primary care, with residents in remote, rural areas most unlikely to have a GP due to lack of availability [23]. The UK has reduced wait times, however, without clear evaluation of outcomes and uncertain applicability to other health care systems, it is difficult predict the efficiency of this strategy [24]. 4. Geography Improving access to care must also address disparities related to income, geography, education, age, gender and
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ethnicity. All have been demonstrated to affect receipt and timeliness of cancer services in Canada [8]. Geographical challenges to accessing cancer care exist in many jurisdictions. In Canada, living further from a cancer center has been associated with lower access to chemotherapy, radiation, and palliative care [8]. In MB, a province with 1.2 million residents, several programs have been developed to address geographical barriers. Community Cancer Programs (CCPs), in locations outside of the capital city enable cancer treatment and services closer to home [25]. In just one year, over nine million kilometers of travel were saved for patients and their family, with administration of 6395 intravenous treatments outside of the main cancer center [25]. Uniting Primary Care and Oncology Network (UPCON) seeks to address communication and collaboration between primary care and oncology providers by allowing access to cancer agency electronic records [25]. Telecommunication links between community sites and academic oncology centers enable communication, counseling and follow up without the need to travel long distances. These programs have been shown to be cost saving and are feasible even in complex patients, such as the post allogeneic stem cell transplant population [26,27].
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advanced at diagnosis in African Americans [33]. Yet, even after controlling for important factors such as comorbidity, fewer African American patients receive chemotherapy or radiation than Caucasians and other ethnic populations [33]. This population, as is often the case with ethnic minorities, was more likely to have lower income and education which was independently associated with survival [33]. However, an important finding from this study is that adjustment for stage, treatment received, and SES resulted in no ethnic variation in survival [33]. This means that provision of access to effective treatments could address disparities in survival. In Canada, upward trends in cancer incidence and mortality are more pronounced in Aboriginal populations (the largest group being First Nations) [34]. There is later diagnosis, with more advanced stage disease, and lower participation in screening programs observed in this group [30]. A complex combination of social determinants and differences in cancer risk factor profiles to must be taken into consideration [34]. Research and cancer programs (including training of care providers in remote locations) to address disparity in access to diagnosis and treatment, as well as other unique needs of this patient population, are underway [34].
5. Socioeconomic status SES is a composite of income, education level and employment status [11]. Longer wait times for cancer diagnosis and treatment and decreased utilization of systemic therapies have been consistently reported in patients with lower SES [8]. A cohort study in Denmark of patients with NHL revealed that patients with less education were more likely to have advanced disease (IPI P2, poor performance status, stage 3 or 4 disease) which was hypothesized to be due to delays in receiving appropriate care [28]. Furthermore, radiation therapy was less likely to be given to patients with lower SES and there was a 30% higher mortality related to SES, even when adjusted for confounders [29]. It is recognized that some discrepancy in treatment uptake could be influenced by patient choice [8]. It may be that financial concerns, cultural differences and language barriers influence decisions. Additionally, patients with lower SES or other vulnerable populations often lack an advocate for access to cancer services [8]. Patient navigators are being increasingly used in Canadian cancer programs [30]. Navigators act to facilitate access to care, take on the role of patient advocacy and addressing cultural and language barriers, with evidence of fostering trust and decreasing anxiety [31]. They can assist with financial barriers including cost of childcare and transportation, provide assistance with paperwork and insurance [31]. There is a growing base of evidence to support clinical effectiveness of patient navigators. In breast cancer these programs are associated with improved screening, adherence to follow up and five year survival [32]. At present, literature evaluating cost effectiveness of navigators is scarce. 6. Ethnicity A large cohort study of Medicare insured patients (P65 years) in the United States found NHL to be more
7. Access to end of life care End of life care is a component of palliative care, services and treatment focus on symptoms and quality of life when cancer can no longer be controlled [9]. There are over 75,000 deaths per year in Canada as a result of cancer with nearly one in two newly diagnosed patients expected to die within five years [6]. Despite this, end of life care is not well integrated into cancer programs [30]. Older patients and men are less likely to receive palliative care [8]. Patients have inadequate access to home based palliative care services in Canada. Studies show that most would prefer to be at home, instead over 55% die in hospital [9]. Frequently, individuals are in acute care units rather than those dedicated to palliative care, this affects the quality of care received and is more costly than alternatives. Nearly three quarters of cancer related expenditures are near the end of life, with the largest expenditure being hospitalization [9]. Toxic treatments and diagnostics are overused in many patients during this time [12]. Improved awareness of patient wishes for end of life care is important and palliative care referrals should be considered earlier in a patient’s disease course [9]. Nonetheless, infrastructure remains a problem that requires attention. A lower proportion of hospital deaths in other countries is likely due to better availability of hospice type or home based palliative care [9]. One innovative tool that is accessible even in remote settings is Canadian Virtual Hospice (www. virtualhospice.ca). Patients, families and health care workers can obtain information on a broad range of topics and use an interactive tool to access a team of professionals with experience in palliative care. This initiative went online in 2004, with over 30,000 visits per month within four years virtual consultations have been provided to thousands [35]. With a high user satisfaction
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rating and a relatively modest operating budget of $600,000 this service is patient centered and efficient [35]. Improving access to palliative and end of life care is necessary for alleviating pain and suffering as well as caregiver burden. A more integrated approach that aims to decrease hospitalization in acute medical beds near the end of life is likely to result in cost savings in the long term [9]. End of life care should be highly prioritized as cancer is the leading cause of death in Canada [9]. 8. Challenges ahead Sustainability is an assurance that sufficient resources are available in the long term for timely, quality health services for all [1]. The ratio of health spending to gross domestic product, a measure of a Nation’s economy, has been increasing since the 1970s in most Organization for Economic Cooperation and Development (OECD) countries including Canada [36]. Despite variations in overall expenditures and funding structure there is considerable consistency in Europe, Canada, Australia and the United States with between 4–7% of health expenditures on cancer care [12]. There is no clear relationship between overall expenditures and outcomes [12]. In Canada 30% of health expenditures come from the private sector, largely from private insurance and out-ofpocket payments [37]. Adjusted for inflation, costs in the private sectors are actually growing at a greater rate than public sector expenditures [37]. Many OECD countries have sought to shift financial burden from the public sector with increasing privatization [37]. This does not decrease total costs; in fact plenty of evidence suggests that the opposite is true [37]. Increasing the proportion of services available through the private sector would benefit those with higher incomes, resulting in greater health disparities. Escalating expenditures are due to a combination of factors including technology, increased resource utilization and health-inflation in excess of general inflation rates [38]. Also, there are more patients and more is spent on each patient [12]. Aging populations are often blamed, but this only accounts for 0.8% of overall increase in expenses annually, and service utilization and expenditures correlate better to chronic disease than age [38]. Advances in technology in oncology contribute significantly to rising costs, though many advances will result in more effective and sometimes more efficient care with fewer complications [12]. A substantial portion of costs could be avoided through prevention, earlier detection and more effective treatment strategies [12]. 9. Future directions In the context of rising health care costs, utilization of long-term strategies to improve access aside from increasing resources is essential [39]. A systematic literature search revealed only 51 studies in the area of inequality to cancer service access in Canada, further research is needed [8]. Information sharing, as with the online national resource www.cancerview.net, used by thousands of unique visitors monthly, is important to reduce duplication
and share innovative initiatives [30]. Methods to reduce or contain costs include investment in information technology, changes in provider compensation or incentives, restructuring clinical decision making, increased efficiency of service delivery, and cost-effectiveness analyses prior to new spending [40]. For example, a project utilizing computerized clinical decision support integrated into an order entry system for diagnostic imaging found that 10–20% of images requested were not indicated, which could result in cost savings of $220 million per year [41]. Quality of care and appropriateness must be strengthened. Methods to confirm adherence to guidelines could decrease unnecessary referrals, diagnostic procedures or treatment [4]. In a Lancet Oncology commission regarding the challenge of delivery of affordable cancer care inefficiency and overutilization was highlighted with a framework to approach these problems. Wide scale system performance assessment, as initiated by the CPAC, to evaluate effectiveness of cancer control programs and flexible tools to predict efficiency of dollars spent are essential [30]. While cancer expenditures are increasing this should not be considered a barrier to improving access. It is estimated that billions of dollars could be saved globally with investment in cancer prevention and better access to treatment [7]. The effects of geography, ethnicity, age and SES on access to cancer diagnostics, treatment and end of life care should be recognized with prioritization of evidence-based solutions. Wait times should not be the main focus, however, if cancer services cannot be accessed in timely manner effectiveness could be compromised [13]. More attention to primary care, prevention and reduction in health inequalities will decrease services required, resulting in shorter wait lists and cost savings [40]. This is especially important in groups with growing health disparities in cancer like First Nations in Canada.
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