Table of Contents
IV. IN ORDER TO DEVELOP A NATIONAL CANCER CONTROL PLAN (NCCP) YOU NEED THE FOLLOWING INFORMATION: “THE NEEDS ANALYSIS”
POPULATION BASED CANCER CONTROL PLANNING FOR COUNTRIES WITH LOW LEVELS OF RESOURCES
Population based cancer control programs are most likely to be successful when they result from good strategic planning based on the burden of cancer in the population, the resources available and affordable for cancer control, and a supportive government, and involved and motivated health care providers and an informed community. In general, the terms National Cancer Control Planning and Plans (NCCP) will be used. This brief guide to population based cancer control planning will focus on whole populations, such as those of nations, provinces and states, in very low and low resource countries. These, often large, populations will almost certainly include sub-populations that may need additional plans. For example, plans for high-risk sub-populations, extremely resource poor usually rural sub-populations and perhaps also wealthy (insured) usually urban sub-populations. Planning for these sub-populations will not be considered here, but the steps in planning are the same.
The mortality: incidence ratio for a country gives an indication of the curability of cancers. It is very sad to note that there are about 10 million new cases of cancer per year and about 7 million deaths, a mortality: incidence ratio of 70%. Therefore most people diagnosed with cancer worldwide will die of it. The world picture is dominated by the fact that most cancer occurs in developing countries at low and very low levels of resources. In these countries most, or nearly all, patients will be incurable at diagnosis. In contrast, the incidence mortality ratio in high resource countries like the USA, Australia, Canada and some European countries reflects the fact that more than half of the cancers that are diagnosed in these countries will be cured. For example in Australia this ratio is about 40% and falling, and 5-year survival after diagnosis of all cancers is about 60%.
II. THE IMPACT OF RESOURCES ON NCCP
• Chapter 13 of the World Health Organisation (WHO) manual “ National Cancer Control Programmes: Policies and managerial guidelines (2002), suggests priority actions for national cancer control programs be tailored to socio-economic contexts1. These priorities are suggested within the context of comprehensive cancer control which means “all actions taken to reduce the burden of cancer on individuals and communities: primary prevention, early diagnosis and screening, treatment for cure, treatment for palliation, end of life support”. This WHO manual considers countries could be at three levels of resources: low, medium and high. The World Bank further divides low resource countries into those with very low levels of resources, and those with low levels of resources. The Figure below, provided by Dr Cecelia Sepulveda (WHO, Geneva), illustrates the critical role of resources in NCCP. This example places certain cancer control actions within the context of these four levels of resources.
Figure. Natural cancer control planning must take account of the resources available.
• It can be seen that for most of the worlds population, probably at least 5 billion people, a national or provincial/state cancer control program for all of the population could only offer primary prevention of the most prevalent cancer risk factors and a basic level of palliative care to the whole population. Since this involves most countries in the world, the additional and crucial components of a national cancer control plan would be strategies to develop a skilled cancer control workforce and facilities for the diagnosis and treatment of cancer. This should also include, as soon as resources allow, the establishment of at least one high quality cancer treatment facility where members of this workforce could be trained and existing health care providers up skilled. This institute should also develop strategies to improve the level of knowledge of cancer and its treatment in the whole population of the country. Countries at low levels of resources can also aim to provide an affordable, competent and available to all primary health care system and provide sufficient specialists so that early diagnosis and treatment of common curable cancers can commence. A critical part of such programs is the education of the general population and primary health care providers about the general curability of cancer if it is diagnosed early, with particular emphasis on early signs and symptoms of cancers such as those of the head and neck, bladder and bowel in all adults, and cancers of the cervix and breast in women. There are now low technology cervical cancer screening methods, which are suitable for countries at low levels of resources, since they do not require trained an infrastructure of medical technologists and laboratories. Countries at the middle and high level of resources probably amount to only 20% of the world’s population, and they can offer more sophisticated screening technologies, such as cervical cytology and breast mammography and treatment of all curable tumors. In these countries cost effectiveness is a major issue, and it is possible to spend a significant proportion of the gross domestic product of a country on health care without getting the benefits that might be expected from such expenditure.
• Before beginning on “how to” develop a population based cancer control plan, it is advisable to consider the following background information on the control of the following chronic non-communicable diseases (NCD): cardiovascular disease, cancer and chronic lung disease, of which cancer is the example being directly addressed in this guide.
III. BACKGROUND INFORMATION ON PLANNING for Control of NCD
• Chronic non-communicable diseases (NCD) now cause most of the disability and deaths in all regions of the world, except for sub-Sahara Africa2. In China, which is the most populous country with more than 1.3 billion people or 22% of the worlds population, NCD caused 80% of deaths and 70% of disability (measured as Disability Adjusted Life Years: DALYs) in 20053. Cardiovascular disease (coronary heart and cerebrovascular disease) and cancer are the number one and two causes of death worldwide, except in Africa, and together with chronic lung disease account for over half of all deaths worldwide2. Diabetes mellitus, hypertension and obesity can be regarded as diseases in their own right, or as intermediate risk factors for cardiovascular disease in particular and also in the case of obesity for some cancers.
• These are chronic diseases, whose incidence (new cases per year) is driven by the ageing of populations, and exposure to the risk factors that cause them. For example, most cancer is diagnosed after the age of 60 years, and there are common risk factors for these NCD: tobacco use, unhealthy nutrition, lack of physical exercise and alcohol abuse. In additional about 20% of cancer worldwide is caused by infectious agents. With the knowledge of NCD risk factors we have today, more than half of all NCD could be prevented by alterations in the lifestyles which cause them, and strategies which combat infections like immunization against the hepatitis B virus to prevent liver cancer and certain human papilloma viruses which cause cervical and other cancers.
• NCD are chronic diseases. It generally takes decades (10-40 years) of exposure to risk factors to acquire an NCD(s), and most NCD sufferers will live some or even many years after they are diagnosed. Therefore, prevention programs, which target NCD risk factors, should be started as soon as a significant risk factor burden is detected, and continued indefinitely. Continuous measurement of the effectiveness of these prevention programs is very necessary, so they can be continually improved. Almost all people diagnosed with an NCD will live most of their remaining life in the community, with intermittent health care and hospital treatment. Therefore, improving the self-management skills of NCD patients and upskilling the community and the family to support them are important strategies in the control of NCDs. Primary prevention programs and community based prevention and patient support programs are generally the most cost effective and most affordable NCD control measures. All countries, including those with very low resources, should benefit from developing a national chronic disease control plan which emphasizes primary prevention programs, and community based prevention and control programs. Finally, palliative care should be available in the community to ease the suffering of NCD patients as the end of their life approaches.
• Because NCDs take many years to develop there are often opportunities to diagnose them very early, perhaps even before the NCD themselves begin. For example cervical screening can cure pre cancers, and treatment of hypertension can prevent strokes. Unfortunately population based early diagnosis and treatment programs are beyond the reach of many countries since they require: (i) a primary health care system that is competent, available and affordable to everyone, which has the skills to recognize the symptoms and signs of NCD early. (ii) a network of general physicians, general surgeons, and pathology laboratories that can perform the tests necessary to diagnose NCD, and then treat them competently. (iii) an infrastructure of treatment facilities that is available and affordable to all, and a system of providing pharmaceutical drugs, which ensures that patients receive the treatment they need at a price, they can afford. This means that national early diagnosis and treatment programs are beyond the reach of most countries with low levels of resources. In those countries planning needs to emphasis the long-term development of a skilled workforce, the provision of facilities for the diagnosis and treatment of NCD and the development of a system of funding which means that early diagnosis and treatment will be available and affordable for the whole population. Demonstration projects in high-risk areas are recommended as a starting point.
• NCD can be treated at all stages of the disease, from early diagnosis and attempted cure to control of curable disease for as long as possible and then treatment at the end of life to ease pain and suffering. For a nation, this requires a well developed network of specialist health care providers and specialist diagnostic and treatment facilities. The procedures and pharmaceutical drugs needed in this endeavour are very expensive and now consume most of the healthcare budget of the world’s wealthiest countries. Only countries at the highest level of resources can contemplate a national plan that aims to deliver this range of treatment to all people diagnosed with NCDs.
• In developing a national chronic disease control plan it is important to emphasise that the only control actions which can reduce the number of new cases per year are primary prevention to reduce risk factor exposure, and early diagnosis and treatment of pre-disease conditions.
IV. IN ORDER TO DEVELOP A NATIONAL CANCER CONTROL PLAN (NCCP) YOU NEED THE FOLLOWING INFORMATION: “THE NEEDS ANALYSIS”
1. The cancer burden in the country, or population. The minimum information needed is a realistic estimate of the number of new cases of cancer each year (cancer incidence), and a reliable estimate of the proportion that are curable versus incurable at diagnosis. This data should provide a rank order of the common cancers, which will indicate those cancers for which effective prevention is possible, and those for which early diagnosis and screening are important. Cancer mortality, prevalence and 5-year survival from diagnosis are helpful additional data sets, but most countries do not have them. Estimates of cancer incidence are available for most countries in “Cancer Incidence in Five Continents”, published by the International Agency for Research on Cancer4. Only a few countries have cancer registries that cover the whole population, and this series of monographs (currently Volume VIII) describes how estimates of incidence can be made when cancer registry data is not available. A small expert group, which includes epidemiologists, behavioural scientists and clinicians, would normally surpervise all the initial data collection and analysis. Health economist advice will usually be needed from time to time.
2. The cancer risk factor burden. Some countries will not have a significant cancer burden, but will have significant prevalence of cancer risk factors. The types of common cancers in a country can give clues to the risks, e.g. lung cancer and smoking, liver cancer and Hepatitis B infection, obesity and colorectal cancer. However, a high quality random population based survey will usually be necessary to measure risk factor prevalence, and hence indicate priorities for prevention. Expert behavioural science input is needed in the design and use of these survey instruments, and also in the analysis of the data collected. The WHO STEPS approach is recommended5, where 3 steps of surveillance are advocated: Questionnaires for risky behavior, Physical Measurements for hypertension and obesity, and Biochemical measurements for hyperglycaemia and hyperlipidaemia, to be used progressively as resources allow.
3. Realistic measures of the resources, skills and infrastructure, available for cancer control and political support for planning. This will enable the planners to decide the countries resource level, which will determine what cancer control actions are possible. All countries should have strong and enduring cancer prevention programs, even if they are restricted to tobacco control initially. For all countries above a very low resource level, early detection and low technology screening should be considered. However, the workforce may be insufficient and so all NCCC plans should emphasise long term workforce planning. Plans that are developed without Government support for both the planning and also for implementation should generally be avoided. One exception would be a plan developed by a Non-Government Organisation (NGO), which either had the resources to implement it and/or could utilise it to build support for advocacy to the Government for its involvement. A good example is the Cancer Council Australia “National Cancer Prevention Policy 2001-2003”, which preceded the first Australian NCCP6. There is an updated version of this policy (2004-2006) 7, which, together with the UICC European manual for cancer prevention8, are excellent references for developing cancer prevention plans. The UICC is currently developing cancer prevention manuals for Asia and South America and these should be available in 2006.
V. DECIDING ON THE PLANNING METHOD
A Decision on the planning method can then be made, on the basis of this information, and information about the health care system and the customs and the culture of the country that will influence cancer control. The planning can be either top down, directed by an Expert Group, or bottom up, built up by consensus from a wide spectrum of cancer experts coordinated by a Steering Committee, or a mixture of both methods. These groups would normally include some or all of the experts who were involved in the initial data collection and analysis described in III above. Whatever the method, widespread consultation during development of the plan with many people who will be affected by it, both the health care providers and also members of the public and cancer patients (the stakeholders), is strongly recommended. This will help ensure that the plan has widespread support.
A Planning Framework, which covers the spectrum of cancer control, is very useful. The current Australian NCCP utilized the framework shown in the Table below9. Its use by planners will ensure that all cancer control measures are considered, even if the final plan must only focus on prevention. This framework is also suitable for planning for other chronic diseases, and has been used in Australia to develop the nation’s chronic disease control strategy. The Table shows a framework that takes a person or a patient as the focus for asking questions about the cancer services which should be delivered. Therefore, ordinary people in the community should expect that there will be programs which will allow them to reduce their risk of getting cancer and having those cancers which can be detected early covered by early detection and screening programs etc. So this framework advocates building up a picture for a population, based on the evidence published as to what the ideal person or patient centred cancer services could be. Then the framework indicates that the current practice in meeting these needs should be measured. This leads to the identification of the gaps between what would be ideal care and what is actually happening. That is, the comparison of best evidence based cancer control with the actual cancer control the population is receiving. In order to decide the priorities for improving cancer control, decisions will have to be made about where the gaps between ideal and actual practice matter. Then the framework indicates that the changes needed at a systems level must be identified. At this stage resources bear very heavily on what gaps can be addressed, and in what way they can be addressed. The framework advocates a systems approach rather than focusing on individual health care providers or individual institutes. It would indicate that there should be a system for cancer prevention in the country, a system for cancer early diagnosis and treatment etc. Finally the framework asks what national actions can help these changes. In a country that is a confederation of states, the national government might have quite limited means of achieving change in various areas of health care. Finally, the time frame of the plan is an important first decision for the planning group.
Well Community (some of whom are more at risk than others)
AIM – People will be able to: Reduce risk Find cancer early Have the best treatment and support during active treatment
Have the best treatment and support between and after active treatment Have the best care at the end of life
WHAT ARE THE IDEAL PERSON or PATIENT CENTRED CANCER SERVICES?
WHAT IS HAPPENING NOW?
Current practice in meeting consumer needs and providing ideal services
WHAT ARE PRIORITIES FOR IMPROVING CANCER CONTROL?
Comparison of best evidence based with actual cancer control
WHAT IS NEEDED FOR CHANGE TO OCCUR? (i.e. at systems level)
HOW CAN NATIONAL ACTIONS ENCOURAGE CHANGE?
Table. National cancer control planning should be done in a framework of comprehensive cancer control planning.
VI. SETTING PRIORITIES
A useful general rule is that there are quite limited numbers of top priority actions that can be applied to a population, with the expectation that they will significantly alter the burden of cancer and/or cancer risk factors in a 5-20 year time frame. The time frame of the plan is crucial. A plan with a five to 10 year time frame can only recommend priority actions for a reduction of the cancer and/or cancer risk factor burden that will impact in that time frame. For example, tobacco control actions should reduce the prevalence of adult cigarette smoking in this time frame, but could not be expected to impact on the burden of tobacco related cancers. Affordable improvements in the treatment of common cancers, which can be applied to the whole population, should impact on survival from some, at least, of those cancers in a five-year time frame, and reduce cancer mortality (burden) in 10 years. Cancer early detection and screening programs can achieve down staging of the targeted cancers for the screened population in a five-year time frame, and a reduction in mortality in 10 years.
The criteria to be used in developing a NCCP may well have been decided by the commissioning body before planning begins, a government or other organization. If criteria have been decided, then they could affect both the information that needs to be obtained about cancer in the country, as well as the priority choosing process. Otherwise criteria for selecting priorities will need to be developed by the committee steering the planning process, in consultation with the stakeholders of the plan. Six criteria were used to assess the 13 priority actions proposed for Australia’s first national cancer control plan; for example, the capacity of the intervention to reduce inequity, and the efficacy or effectiveness of the interventions, based on available scientific studies and finally a cost-effectiveness analysis was undertaken10. The first Chinese national cancer control plan used health policies which stressed “prevention first”, and “making rural areas as focal points: as two of a number of criteria used to determine the 6 key points (priorities) in that plan11
The resources available in any country are never likely to enable all the high priority actions that could be taken to reduce the cancer burden to be undertaken. Therefore cost-effectiveness is the criterion that is becoming the criterion that must be often met in deciding the priority actions that will be recommended for implementation. The “best buy” approach, that appeals to many Governments. The first Australian NCCP also used cost effectiveness analysis to choose 8 of the 13 priority actions for that plan10.
This guide aims to help low resource countries begin NCCP. The WHO will publish, module by module, beginning in May 2006 a comprehensive web-based guide to NCCP, which is suitable for all countries. It is aimed primarily at Ministry of Health Planners, but should be an excellent resource for any Government or NGO that wants to develop a cancer plan for a population. The UICC will also publish in 2006 a web-based UICC Cancer Planning guide for NGO, which aims to complement the WHO guide by focussing on the needs of NGO. This brief guide aims to complement both these resources, focussing on the initial planning needs of low resource countries.
Professor Robert Burton, Strategic Leader UICC and Senior Adviser National Cancer Control Initiative (NCCI) of Australia, with help from colleagues at the UICC, American Cancer Society University, WHO and the Cancer Council Victoria (TCCV). Special thanks to Professor Helene Sancho-Garnier (UICC), Ms Stella De Sabata (UICC), Dr Cecilia Sepulveda (WHO), Dr Gauden Galea (WHO), and Ms Dorothy Reading (TCCV).
Melbourne, Australia, April 2006.
1. National Cancer Control Programmes: policies and guidelines, 2nd Ed" World Health Organization (WHO) 2002
2. Preventing chronic diseases: a vital investment. WHO, Geneva, 2005.
3. Wang L, Kong L, Wu F, Bai Y, Burton R. Preventing chronic disease in China. Lancet 2005; 366: 1821-1824
4. Cancer Incidence in Five Continents, Volume VIII / editors D. M. Parkin et al. IARC Scientific publication; 155, 2002.
5. Armstrong T, Bonita R. Capacity building for integrated noncommunicable disease risk factor surveillance system in developing countries. Ethnicity and Disease 2003; 13:S2-13
6. National Cancer Prevention Policy 2001-2003, The Cancer Council Australia, Sydney, Australia.
7. National Cancer Prevention Policy 2004-2006, The Cancer Council Australia (www.cancer.org.au)
8. Evidence Based Cancer Prevention: Strategies for NGOs. A UICC Handbook for Europe (www.uicc.org)
9. National Service Improvement Framework for Cancer, National Health Priority Action Council
10. Priorities for Action in Cancer Control: 2001-2003, Cancer Strategies Group, Commonwealth of Australia, 2001. http://www.health.gov.au/pq/cancer/pubs/pacc.htm
11. Ministry of Health, Peoples Republic of China. Program of Cancer Prevention and Control in China (2004-2014), Beijing