1

Introduction

During the last century, impressive improvements in health care have decreased maternal and infant mortality, malnutrition, and infectious disease while raising life expectancy in most countries. Together with associated declines in fertility, increased life expectancy has generated a demographic transition; developing countries,1 which customarily had youthful populations, now have older and aging ones. This transition has in turn created an emerging set of health problems resulting from the fact that older populations are more vulnerable to chronic diseases, including neurological and psychiatric disorders. This is a particularly challenging situation for countries still struggling with high levels of poverty and communicable disease. Additionally, improvements in health care and sanitation are enabling more children in developing countries to survive infancy, but without concomitant efforts to reduce the occurrence of developmental disabilities, the number of disabled children is likely to increase.

Neurological, psychiatric, and developmental disorders are estimated to affect as many as 1.5 billion people worldwide—a number that is expected to grow as life expectancy increases around the globe. Most disorders affecting the brain and its neural connections result in long-term disability, and many have an early age of onset. Measures of the mortality associated with these disorders miss the major burden of disease, while measures of associated disability vastly

1  

In this report, the term developing countries includes those countries with economies classified as middle- and low-income in the 1999/2000 World Development Report (for additional information, see Appendix A).



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Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World 1 Introduction During the last century, impressive improvements in health care have decreased maternal and infant mortality, malnutrition, and infectious disease while raising life expectancy in most countries. Together with associated declines in fertility, increased life expectancy has generated a demographic transition; developing countries,1 which customarily had youthful populations, now have older and aging ones. This transition has in turn created an emerging set of health problems resulting from the fact that older populations are more vulnerable to chronic diseases, including neurological and psychiatric disorders. This is a particularly challenging situation for countries still struggling with high levels of poverty and communicable disease. Additionally, improvements in health care and sanitation are enabling more children in developing countries to survive infancy, but without concomitant efforts to reduce the occurrence of developmental disabilities, the number of disabled children is likely to increase. Neurological, psychiatric, and developmental disorders are estimated to affect as many as 1.5 billion people worldwide—a number that is expected to grow as life expectancy increases around the globe. Most disorders affecting the brain and its neural connections result in long-term disability, and many have an early age of onset. Measures of the mortality associated with these disorders miss the major burden of disease, while measures of associated disability vastly 1   In this report, the term developing countries includes those countries with economies classified as middle- and low-income in the 1999/2000 World Development Report (for additional information, see Appendix A).

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Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World understate the burden. Social isolation and stigma often add to the medical and financial burden borne by patients and their families. NEUROLOGICAL, PSYCHIATRIC, AND DEVELOPMENTAL DISORDERS Although numerous and diverse, the neurological, psychiatric, and developmental disorders addressed by this report share several important features. First, they are increasingly recognized as disorders of the brain and its neural connections that are precipitated by injury, psychological trauma, chronic adversity, or genetic vulnerability. Several psychiatric disorders, including schizophrenia, are now understood to have a strong biological component, while disabling psychiatric symptoms are known to result from neurological diseases, as when depression follows stroke.2 Indeed, integrated knowledge of psychiatry and neurology now holds promise for greatly improving medical care for illnesses affecting the brain.[1,2] Thus, throughout this report, neurological, psychiatric, and developmental disorders are collectively referred to as brain disorders. The aggregate examination of these disorders not only reflects their common systemic origins, but also represents a strategy that can leverage the limited resources available to provide the widest possible benefit in developing countries. Many of these disorders are chronic, debilitating conditions. Programs and research show that much of the disability associated with these disorders can be prevented or reduced through effective, affordable measures. As discussed in Chapter 2, poverty frequently accompanies and exacerbates the proximal causes of brain disorders. Thus people in low-income countries face increased risk of developing these disorders. This report is therefore intended to call attention not only to the serious toll exacted by brain disorders in low- and middle-income countries, but also to the significant potential for reducing that impact through cost-effective measures. While recognition of common features among brain disorders should inform efforts to reduce their impact, it will also be necessary to develop targeted strategies for the prevention and treatment of specific illnesses and rehabilitation for those who suffer from them. The committee's contribution to this endeavor appears in Part II of this report, whose chapters focus on six classes of brain disorders: developmental disabilities, epilepsy, schizophrenia, bipolar disorder, unipolar depression, and stroke. Other brain disorders contributing to the burden of disease in developing countries but not among the disorders discussed in Part II include Alzheimer's disease, addictive disorders, HIV encephalopathy, meningitis, peripheral neuropathies, autism, posttraumatic stress disorder, cerebral palsy, dementia, and Parkinson's disease. 2   See Chapter 7 and Chapter 10.

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Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World CHALLENGES FOR THE CARE OF BRAIN DISORDERS Despite their profound consequences, brain disorders have received little attention in the developing world. The reason for this neglect is that health planning and priority setting have been based mainly on mortality data, which do not reflect the long-term disabilities commonly associated with these and other chronic disorders. As a result of the 1996 publication of the Global Burden of Disease Study,[3] policy makers have begun to recognize the social and economic impact of brain disorders. That landmark study compared the total cost of various diseases on the basis of disability-adjusted life years (DALYs), a measure that accounts for the overall burden of a disease by combining years of potential life lost as a result of premature death with years of productive life lost because of disability.3 Projections based on this method indicate that brain disorders will account for an increasing proportion of the future disease burden in both developing and developed countries. Brain disorders frequently present different challenges in the developing than in the developed world. Differences in incidence and prevalence, in social and economic factors, and in timely access to adequate health care may cause a disorder such as epilepsy, which is largely controlled in industrialized countries, to go unrecognized or untreated in low- and middle-income countries. In the latter countries, medications and other treatments are often unavailable, adherence to available treatment is poor, records of care and health statistics are often incomplete, and research on effective treatments and methods of delivery are lacking. In some communities, traditional beliefs lead to stigmatization of patients with brain disorders and their families, or to the use of treatments that exacerbate the disorder or harm the patient. The problem is further complicated because many of the mentally ill in developing countries have been homeless or housed in asylums for a large part of their adult lives. On the other hand, the strong family and community ties often found in developing countries can form the core of cost-effective prevention, care, and rehabilitation (see Chapter 3). Overcoming discrimination against those who suffer from brain disorders requires the educating of communities to gain their active collaboration in respecting and caring for patients. Medical care for the majority of the world's population living in developing countries is provided through community health care centers organized and financed by national governments or by religious and other nongovernmental organizations. These health care centers often focus on the prevention and treatment of acute conditions to the exclusion of brain disorders and other chronic illnesses. 3   The indicator burden of disease measured in disability-adjusted life years (DALYs) reflects the burden due to both death and disability. It does not attempt to measure the suffering and loss of the affected individuals and their families.

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Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World During the past several decades, basic care for brain disorders has become available in a small number of developing countries through nationally sponsored public health programs and community primary care centers. In many developing countries, however, care for the vast majority of patients with these disorders—poor people who live in rural communities or urban shantytowns—is limited by a general lack of physicians (and an even greater lack of specialists), as well as unavailability of resources for treatment. The physician:patient ratio in rural areas of the developing world can be 1:20,000, and is much greater for psychiatrists and neurologists. Given current resource limitations and development trends,4 it is unlikely that health care centers can be adequately staffed by physicians or specialist nurses in the foreseeable future. The most feasible approach to filling the staffing gap will be by providing trained health care workers with protocols for the prevention, diagnosis, and treatment of common disorders along with essential medications and guidelines for their use (see Chapter 3). This report does not attempt to define a system that will work in every situation. It does describe a general approach that needs to be supported by training of staff at all levels. Implementation of this approach will depend on the adaptation of effective, affordable treatments from developed countries, even if they are not state of the art; referral of cases by primary care workers, rather than dependence on traditional healers or the chance of being hospitalized later; diagnosis and provision of treatment by general physicians with some training in neurological and psychiatric care; supervised follow-up and maintenance therapy by primary care workers (nurses in some settings, health care workers in others); continued consultation on and referral of patients as needed; government support through policy and law; national centers guided by specialists; and increased capacity for operational research. GOALS OF THE STUDY The committee was charged to prepare a consensus report that would define the increasing burden caused by brain disorders and identify opportunities for effectively reducing that burden with cost-effective strategies for prevention, diagnosis, and treatment. The committee was also asked to identify areas of research, development, and capacity strengthening that would contribute most significantly to reducing the overall burden of these disorders in developing countries. In its 1997 report, America's Vital Interest in Global Health, the Institute of Medicine's Board on Global Health [4] examined the long-term benefits to the developed world of improving global health. Building on the findings of that report and in conjunction with recent initiatives supported by the sponsors of the 4   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.

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Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World present study, international development agencies, development banks, and developing-country communities, this report provides an evidence base to inform the next steps in addressing brain disorders in the developing world. The committee analyzed the scientific evidence available on these disorders to: define the overall disease; describe the causes and risk factors associated with brain disorders; identify effective and affordable strategies for prevention, treatment, and rehabilitation; and identify mechanisms for incorporating care for brain disorders into existing health systems in developing countries. This report does not examine a number of significant brain disorders, such as Alzheimer's disease, HIV encephalopathy, meningitis, addictive disorders, peripheral neuropathies, posttraumatic stress disorder, and injuries of the brain and central nervous system. We emphasize that their exclusion here is not intended to imply that these disorders and others meeting the criteria listed above are unworthy of future study. On the contrary, the committee hopes that future efforts focusing on those other disorders will also advance the goals of the present report. The findings, strategies, and recommendations of this report are intended to engage a broad spectrum of individuals and organizations that have the potential to play vital roles in addressing the global impact of brain disorders. They include, but are not limited to, policy makers worldwide, United Nations agencies, multilateral development banks, international donor agencies, foundations, non-governmental organizations, professional societies, the pharmaceutical industry and medical device companies, advocacy groups, health care professionals, researchers, consumer and patient advocacy groups, and interested members of the public. This diverse and influential audience holds the key to raising public awareness and generating the commitment and resources necessary to reduce the burden of brain disorders in developing countries. STUDY APPROACH The Institute of Medicine assembled a study committee with broad international expertise in clinical and basic research, economics, epidemiology, microbiology, neurology, pediatrics, psychiatry, and public health. The members of the committee were also chosen for their first-hand experience with these disorders in a wide range of middle- and low-income countries. The committee members are listed at the beginning of the report, and brief biographies are given in Appendix E. The data for this study were identified by the committee and other experts representing various 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 brain disorders.

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Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World Although much of the published information on these disorders in developing countries was found in international and national journals and reports, some of the evidence has appeared in local journals, the proceedings of meetings, and unpublished reports prepared for the World Health Organization (WHO) and other international organizations. To tap this knowledge base, the committee enlisted a broad range of experts with recent research or service experience in developing countries. Data and supportive evidence were provided by these experts through workshop presentations, commissioned papers, and technical consultation on report chapters (for additional information see Appendix A). The framework for the committee's deliberations and examination of each of the selected disorder groups included an overview of the available epidemiological parameters, a review of the existing knowledge base on interventions, and projections of the feasibility, cost, and impact of proposed interventions. The combined weight of such evidence, the committee believes, has produced an accurate account of the state of knowledge concerning the epidemiology of the six groups of disorders covered in this report, their treatment and management in developing countries, and the capacity of local health care systems to provide such treatment. Evaluation of the available evidence enabled the committee to identify gaps in knowledge and to propose strategies for a research agenda that would fill these gaps. The findings, strategies, and recommendations included in the report were developed from this broad base of evidence; we also indicate where the data are inadequate to support additional conclusions. ORGANIZATION OF THE REPORT Part I of this report reviews challenges and opportunities for the prevention, treatment, and rehabilitation of the broad range of brain disorders in developing countries. Chapter 2 describes the magnitude of the problem caused by these disorders and reviews the various factors—including poverty and gender inequalities —that serve to magnify their effects. Chapter 3 explores the process of designing and maintaining health systems capable of addressing brain disorders in developing countries. Chapter 4 summarizes the committee's findings and proposes strategies for addressing core issues of policy, intervention, research, and capacity building. Part II examines the six groups of brain disorders cited earlier: developmental disabilities (Chapter 5); epilepsy (Chapter 6); schizophrenia (Chapter 7); bipolar disorder (Chapter 8); unipolar depression (Chapter 9); and stroke (Chapter 10). Each chapter presents a description of the disorder; its prevalence, incidence, and other relevant epidemiological parameters; associated risk factors; an analysis of interventions and capacity-building strategies from the point of view of cost-effectiveness and applicability in developing countries; and recommendations for policies, interventions, capacity building, and future research.

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Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World REFERENCES 1. B.H. Price. D. Adams, and J.T. Coyle. Neurology and Psychiatry: closing the great divide. Neurology 54:8–14, 2000. 2. S.E. Hyman. The milennium of mind, brain, and behavior. Archives of General Psychiatry Jan 57:88–89, 2000. 3. C.L. Murray and A.L. Lopez, eds. The Global Burden of Disease. Boston: The Harvard Press, 1996. 4. Institute of Medicine (IOM). America's Vital Interest in Global Health. National Academy Press, Washington, D.C., 1997.

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Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World Summary of Findings: The Magnitude of the Problem Brain disorders—neurological, psychiatric, and developmental—are a leading cause of death and disability worldwide and are responsible for a large proportion of the burden of disease in developing countries. Brain disorders are projected to increase in the coming decades as a result of large-scale demographic and epidemiological shifts. By 2020, for example, depression is projected to be the second and stroke the leading cause of disability-adjusted life years (DALYs) lost worldwide. The stigma associated with epilepsy, schizophrenia, and mental retardation often prevents people with these disorders from seeking and getting medical attention. It also results in the denial of social, educational, and employment opportunities to affected individuals and their families. The relationship between poverty and illness is complex and circular; poverty can be both a cause and a result of ill health. Poverty is associated with specific risk factors for brain disorders, including poor nutrition, unhygienic living conditions, inadequate access to health care, lack of educational and employment opportunities, and debt. These disorders can substantially worsen people's economic circumstances because of the cost of medical or traditional treatments; the limits they impose on educational opportunities; and interference with effective functioning at home, work, and school. Considerable research in developing countries indicates that poverty and several psychiatric disorders, such as depression, exacerbate each other. Poverty is more common and more severe for women than for men. Women also have a more severe health burden from psychiatric disorders. Depression affects women disproportionately. Specialist and physician care for brain disorders is extremely limited in most developing countries. Health care services in many countries lack the capacity, in terms of physicians, nurses, and trained health care workers, to provide care for these disorders to the majority of their populations.