Neurological, psychiatric, and developmental disorders exact a profound economic and personal toll worldwide, yet public and private health care systems, particularly in developing countries, have paid little attention to them. Today, growing recognition of the prevalence of these disorders and the availability of prevention strategies and cost-effective treatment make it both important and possible to substantially reduce their impact, even where resources are limited.
Neurological, psychiatric, and developmental disorders encompass a wide range of disabling conditions, including epilepsy, stroke, schizophrenia, unipolar depression, bipolar disorder, mental retardation, cerebral palsy, and autism. Although diverse, these conditions are increasingly recognized as disorders of the brain and its neural connections interacting with the environment; accordingly, in this report they are often referred to in the aggregate as brain disorders.
Brain disorders are currently estimated to affect as many as 1.5 billion people worldwide—a number that is expected to grow as life expectancy increases. Since most disorders affecting the brain and its neural connections result in long-term disability and many have an early age of onset, measures of prevalence and mortality vastly understate the disability they cause. Social isolation and stigma often add to the medical and financial burden borne by patients and their families.
The breadth and diversity of brain disorders present a complex task to researchers attempting to measure their impact. Health care economists have widely adopted the term burden of disease to express a combination of the frequency and distribution of a disorder or group of disorders, the death and disabil-
ity they cause, and the resulting economic impact. Brain disorders are responsible for at least 27 percent of all years lived with disability in developing countries. The collective impact of brain disorders is partially captured by disability-adjusted life years (DALYs), a measure of the burden of disease that combines years lost as a result of death and disability, the latter being weighted according to severity. When disability is taken into consideration along with death, brain disorders comprise nearly 15 percent of the burden of disease in developing countries. Current figures are seriously underestimated, however, since many patients with these conditions in developing countries, particularly children, are not diagnosed and do not receive medical care. In the United States, 12 to 18 percent of children are estimated to be disabled in some way. The numbers are likely to be substantially higher in developing countries, where children are also more frequently exposed to infectious diseases and nutritional deficiencies. As improvements in health care and sanitation enable more children in the developing world to survive, the number of children with developmental disabilities is very likely to rise without concomitant efforts to reduce their occurrence.
Today's rapidly changing global economy poses a significant challenge to the developing world. To meet it, developing countries must foster healthy, educated workers, a process that begins with prenatal care and continues to adulthood. Since many brain disorders interfere with education as well as health, they present a threat to economic development. For low-income countries, the social and economic consequences of ignoring the burden of brain disorders are large and will continue to grow.
Responding to growing awareness of the impact of brain disorders and initiatives undertaken to address them, the Committee on Neurological, Psychiatric, and Developmental Disorders in Developing Countries, convened by the U.S. Institute of Medicine, was charged to prepare a consensus report that would define the increasing burden caused by neurological, psychiatric, and developmental disorders in developing countries, and to identify opportunities for effectively reducing that burden with cost-effective strategies for prevention, diagnosis, and treatment. The committee was also asked to identify areas for research, development, and capacity strengthening that would contribute most significantly to reducing the overall burden of these disorders in developing countries (Part I of the report) and to focus on several major groups of conditions: developmental disabilities, epilepsy, schizophrenia, bipolar disorder, unipolar depression, and stroke (Part II of the report).
The study was sponsored by the Global Forum for Health Research, U.S. National Institutes of Health's Fogarty International Center, U.S. National Institute of Child Health and Human Development, U.S. National Institute of
Mental Health, U.S. National Institute of Neurological Disorders and Stroke, and U.S. Centers for Disease Control and Prevention.
The U.S. Institute of Medicine assembled a study committee with broad international expertise in neurology, psychiatry, pediatrics, microbiology, epidemiology, public health, economics, and clinical and basic research. Members of the committee were chosen for their first-hand experience with these disorders in a wide range of middle- and low- income countries. *
In its 1997 report, America's Vital Interest in Global Health, the Institute of Medicine's Board on Global Health presented the long-term benefits that would accrue to the developed countries from improvements in global health. Building on the findings of that report and in conjunction with initiatives supported by this report's sponsors, international development agencies, development banks, and developing country communities, this report provides an evidence base to inform steps needed to address brain disorders in developing countries. The report committee considered a wide base of scientific evidence on these disorders in order to:
define the burden of morbidity and disability due to brain disorders;
describe the causes and risk factors associated with these disorders;
identify effective, affordable strategies for their prevention and treatment, and rehabilitation of the afflicted;
identify mechanisms for incorporating care for brain disorders into existing health care systems in developing countries.
The data for this study were identified by the committee and other experts from several disciplines through bibliographic references on related topics, and through databases such as Medline, university libraries, and Internet sites of organizations associated with research and services for neurological and psychiatric disorders. Although much of the published information on neurological and psychiatric disorders in developing countries was found in international and national journals and reports, some of the evidence is from regional journals, the proceedings of meetings, and unpublished reports prepared for the World Health Organization (WHO) and other international organizations. To review this knowledge base, the committee enlisted experts with recent research or service experience in developing countries. Data and supportive evidence were provided by these experts in workshop presentations, commissioned papers, and technical consultation. The framework for the committee's deliberations included an
The countries addressed in this report have per capita incomes of $9266 or less. Low-income countries have per capita incomes of less than $766. The poorest people live on less than $2 a day.
overview of epidemiological parameters, a review of the evidence that supports interventions, and projections of the feasibility, cost, and expected impact of proposed interventions.
The combined weight of such evidence, the committee believes, provides an accurate account of the epidemiology of the six disorders covered in this report, their treatment and management in developing countries, and the capacity of local health care systems to treat them. Evaluation of the available evidence enabled the committee to identify areas where gaps in knowledge exist and to propose strategies for a research agenda that would inform these areas. The findings, strategies, and recommendations of this report have been developed from this broad base of evidence. The report also specifies where the data are inadequate to support additional conclusions.
This report is intended to engage a broad spectrum of individuals, including policy makers at the international level, such as WHO, the World Bank, and UNICEF; at the national level, such as ministries of health, finance, education, and social welfare; and at regional and local levels. It is also addressed to health care providers and professionals, researchers in relevant fields and the funding agencies that support them, health care advocates, and interested members of the public.
MAGNITUDE OF THE PROBLEM
Disease control efforts in the developing world have been effective in increasing life expectancy and reducing fertility. The result has been a demographic transition from predominantly youthful populations to older and aging ones. This transition has been accompanied by increases in the health problems associated with older people who are particularly vulnerable to chronic diseases, including a number of brain disorders. As a consequence, many low-income countries now face the double burden of increases in these noninfectious diseases and continuing high levels of infectious ones, including some that result in brain disorders (e.g., AIDS and cerebral malaria).
Each of the six classes of brain disorders examined in Part II of this report has a range of personal, social, and economic impacts:
Developmental disabilities include such conditions as mental retardation, behavioral disorders, and cerebral palsy that result from abnormal development or injury to the brain and central nervous system during infancy or childhood. These disorders often impose enormous personal, social, and economic costs as a result of early onset and lifetime disability. Many of the causes of developmental disabilities—including genetic and nutritional factors, infectious diseases, and traumatic events—are particularly common in low-income countries.
Epilepsy affects an estimated 40 million people in developing countries, roughly 85 percent of the total number affected worldwide. The disorder commonly attacks young adults in the most productive years of their lives and fre-
quently leads to their being unemployed. Because of stigmatization and false beliefs, epilepsy is frequently untreated and even unrecognized in the developing world.
Schizophrenia causes severe and chronic disability, due in part to its connotations of “insanity.” The disorder is estimated to affect 33 million people in developing countries. Schizophrenia, however, can be controlled with a variety of treatments that offer patients significant improvements in productivity and quality of life.
Bipolar disorder accounts for about 11 percent of the neuropsychiatric disease burden in developing countries. The disorder is characterized by alternating episodes of extreme elation (mania) and severe depression. Between 25 and 50 percent of patients in developed countries with bipolar disorder attempt suicide, and as many as 15 percent are successful. Treatments that significantly reduce the debilitating symptoms of the disease are available, yet few of these treatments are being used in developing countries.
Depression is estimated to be the leading cause of disability worldwide. Its risk factors include family history of the disease, chronic social adversity, and poverty. Because depression typically results from a combination of causes, prevention and treatment require a multifaceted approach. In developing countries this approach may involve a combination of health care, public health awareness, community care, and socioeconomic development.
Stroke and its associated disability are increasing in developing countries, where the disorder is projected to become the fifth leading condition contributing to the disease burden by 2020. Because of the high risk of death, long-term disability, and recurrence after a first stroke, prevention is key to reducing the public health impact of cerebrovascular disease.
Statistics alone do not express the social and economic losses suffered by patients, their families, and the community because of brain disorders. The social and economic demands of care, treatment, and rehabilitation strain entire families, seriously diminishing their productivity and quality of life. The stigma often associated with these disorders adds to the burden; indeed, in some communities the stigma leads to denial of basic human rights.
Despite the burden of disease represented by brain disorders, these conditions are largely absent from the international health agenda. The need for attention is particularly urgent in the developing world, where poverty and brain disorders tend to reinforce each other, and where the vicious cycle is frequently exacerbated by gender inequalities. Yet there is some hope in the fact that in some developing country settings, people have drawn on their strong family and community relationships to develop programs that provide cost-effective health care for those afflicted.
FINDINGS AND FUTURE STRATEGIES
Where resources are scarce, policy makers face difficult choices in allocating limited funds for health care. Such decisions are best made on the basis of rigorous evaluation of the efficacy of proposed interventions and, for those interventions that prove efficacious, their cost-effectiveness. Since most brain disorders impair cognitive function, the determination of cost-effectiveness must encompass the costs associated with prevention, detection, treatment, rehabilitation, chronic care, and lost wages as well as the impact on family members. Because only preliminary and limited evidence is available, more research will be required to refine the calculations of these costs and apply them in developing countries. Since health care interventions are only as good as their implementation, research on cost-effectiveness must also address health care management as well as prevention and treatment outcomes. Thus, the expansion of health care systems in developing countries to include cost-effective care for brain disorders requires not only increased capacity for delivery of services but also increased capacity for operational research to evaluate the quality and effectiveness of care. The findings of such research would guide an iterative process of improving clinical care at affordable costs.
Review of prevention, treatment, and rehabilitation programs in developing countries and of cost-effective treatments in both developed and developing countries reveals several effective interventions for brain disorders. Some developing countries have successfully integrated low-cost prevention, screening, and treatment methods for developmental disabilities, epilepsy, and depression into primary health care programs. Similarly, some have created affordable, community-based rehabilitation programs that help people disabled by brain disorders live as normally as possible. Where these programs provide good care, they serve as a starting point for addressing the burden of brain disorders in the developing world. However, the existence of effective treatments alone does not ensure programmatic success. Programs need to be designed and implemented according to the needs and resources of each location. A one-size-fits-all approach is not likely to succeed.
Determination of the appropriate level of effective, affordable care for brain disorders depends on cost-effectiveness analyses for a range of treatments in different systems of health care. Variability among communities in their recognition of neurological and psychiatric illness, their expectations for medical care, and ability to pay for drugs and other services complicates choices. Optimal approaches will reflect local costs and benefits.
Once care for brain disorders has been incorporated into a system of health care, maintaining a cost-effective program will require monitoring, evaluation, and investigation of alternatives. Moreover, research on the cost-effectiveness of treating brain disorders is a key element in educating governments, missions, and nongovernmental organizations on the affordability of these services.
The strategies presented below and discussed in Chapter 1, Chapter 2, Chapter 3, through Chapter 4 are aimed at reducing the overall burden of brain disorders. Recommendations appear in Part II of the report: Chapter 5, Chapter 6, Chapter 7, Chapter 8, Chapter 9, through Chapter 10. Each of these chapters presents a description of a disorder; its prevalence, incidence, and other epidemiological parameters in developing countries; the risk factors for the disorder; an analysis of interventions and capacity-building strategies; and recommendations on policies, interventions, capacity building, and future research needs.
To Reduce the Burden of Brain Disorders Now
Strategy 1. Increase public and professional awareness and understanding of brain disorders in developing countries, and intervene to reduce stigma and ease the burden of discrimination often associated with these disorders.
Both the public and health professionals may be unaware that effective, affordable treatments are available. Educational programs should be tailored to the needs of local communities, and messages adapted to local cultural beliefs. Advocacy groups, educators, religious leaders, and traditional healers can be effective at delivering this information. Governments can reinforce these efforts with laws that protect people with brain disorders from abusive practices, ensure access to health care, and prevent discrimination in education, employment, housing, and other opportunities.
Strategy 2. Extend and strengthen existing systems of primary care to deliver health services for brain disorders. Secondary and tertiary centers should train and oversee primary care staff, provide referral capacity, and provide ongoing supervision and support for primary care systems in developing countries.
Many countries have specific disease-control and primary care programs for infectious diseases and maternal and child health. These programs can be expanded to include effective services for prevention, identification, treatment, rehabilitation, and surveillance of brain disorders. Integration of care for brain disorders into the primary health care system should occur as part of national policy. Because diagnosis and treatment of these disorders often requires specialized skills and training, primary care programs must be closely linked with secondary and tertiary facilities, such as district and regional hospitals. Cooperative funding for this additional care should come from national and local governments, international nongovernmental organizations, and development agencies.
Strategy 3. Make cost-effective interventions for brain disorders available to patients who will benefit. Financial and institutional constraints require selectivity and sequencing in setting goals and
priorities. The continued implementation of these interventions should also be informed by ongoing research to reveal the applicability and sustainability of such programs.
Cost-effective interventions are available now to address much of the disease burden (see Table 1). To the extent possible, treatment programs for brain disorders should follow best-practice guidelines. Where this is not possible because of capacity or resource limitations, however, implementation of component practices is likely to be more cost-effective than inaction. Adapting existing interventions to local levels of resource availability is feasible, and standard approaches for assessing the cost-effectiveness of health care delivery should be used to this end. Once care for brain disorders has been incorporated into a system of health care, maintaining a cost-effective program will require monitoring, evaluation, and comparison with alternatives.
TABLE 1 Cost-Effective Interventions for Management of Brain Disorders*
To Create Options for the Future
Strategy 4. Conduct operational research to assess the cost-effectiveness of specific treatments and health services in local settings, along with epidemiological research to monitor the incidence, prevalence, and disease burden of brain disorders in developing countries.
Because of limited knowledge about the delivery of appropriate interventions in developing countries, there is a need for continuing research to identify local risk factors and their prevalence, to estimate the economic costs associated with these disorders, to assess cost-effective modes of prevention and treatment, and to develop and evaluate approaches for overcoming nonfinancial barriers to implementation.
Strategy 5. Create national centers for training and research on brain disorders in developing countries. Link these centers with institutions in high-income countries through multicenter research projects, staff exchanges and training, and Internet communication.
National centers for training and research can conduct applied research that is tailored to local needs and resources while simultaneously developing the technical capacity of professional and community health care providers. Such centers can also provide leadership to establish priorities and develop planning strategies. These centers should establish and coordinate professional information networks as repositories of knowledge on effective prevention and intervention strategies, training programs, and research findings.
Strategy 6. Create a program to facilitate competitive funding for research and for the development of new or enhanced institutions devoted to brain disorders in developing countries. This effort should be global, and spearheaded by the Global Forum for Health Research, the World Health Organization, and well-funded research centers, such as the U.S. National Institutes of Health and the Centers for Disease Control and Prevention. To ensure the sustainability of the program, major donors—such as the World Bank, foundations, and governmental and non-governmental aid organizations—must commit initial investments to this effort, and longer-term annual budgets must be established.
The integration of brain disorders into primary care, with monitoring and assistance from secondary and tertiary centers in developing countries, will require broad international support and multiple funding sources. This support should include collaborative research with institutions in developed countries as well as opportunities for training of professionals from developing countries in operational research and surveillance. Substantial long-term funding will be required to
develop a worldwide network of national training and research centers, and to enable the participation of researchers in developing countries.
A growing body of evidence indicates that the social and economic impact of neurological, psychiatric, and developmental disorders is large and increasing. Present figures almost certainly underestimate the impact of brain disorders, particularly in the developing world, yet these disorders have largely been ignored by the health systems of those countries.
Immediate and long-term remedies exist that could significantly reduce the burden of brain disorders in the developing world. These include low-cost preventive and diagnostic measures, medicines, and therapeutic and rehabilitative techniques. The benefits of these remedies could be maximized if they were implemented through a comprehensive health care system, with operational research being carried out on needs and cost-effectiveness in local settings. The identification and testing of interventions for brain disorders in developing countries should eventually yield more and better strategies. Research on incidence, prevalence, and socioeconomic impact will provide the information needed to set goals and priorities.
A sustained, comprehensive, and integrated effort to reduce brain disorders in developing countries will require broad institutional support. This support could be achieved through cooperative links among the full spectrum of organizations associated with brain disorders, spearheaded by the sponsors of this report: the Global Forum for Health Research, the U.S. National Institutes of Health (National Institute of Mental Health, National Institute of Neurological Disorders and Stroke, National Institute of Child Health and Human Development, and the Fogarty International Center), and the U.S. Centers for Disease Control and Prevention.