4

Findings and Future Strategies

The high economic and social costs of ignoring neurological, psychiatric, and developmental disorders include lost work time, reduced productivity, and the increased cost and difficulty of treating conditions that have become more debilitating. While these outcomes have their profound effects on patients and their families, they also impede economic development to an extent that warrants the attention of national and international policy makers. Their leadership is crucial to the identification of affordable solutions for addressing brain disorders and to the enlistment of health care professionals in implementing such strategies.

Brain disorders—neurological, psychiatric, and developmental—account for a significant proportion of the global burden of disease (see Chapter 2). Growing recognition of the prevalence of brain disorders, as well as the availability of cost-effective treatments, may now lead to the adoption of measures designed to achieve significant reductions in the disease burden due to these disorders. This is true even where resources for health care are limited. The strategies proposed in this chapter highlight the actions needed to achieve this goal and describe the additional analyses required for implementation and research.

Though brain disorders have been largely neglected by health planners and practitioners throughout the developing world, a limited number of innovative programs have been implemented in countries and communities with varying levels of resources. In most cases, these programs have not been extensively evaluated for cost-effectiveness or long-term sustainability. However, a review of the existing evidence permits examination of these programs as preliminary models for the development of other programs and future planning (components of these programs are described in Chapter 3 and throughout Chapter 5, Chapter 6, Chapter 7, Chapter 8, Chapter 9 through Chapter 10).



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Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World 4 Findings and Future Strategies The high economic and social costs of ignoring neurological, psychiatric, and developmental disorders include lost work time, reduced productivity, and the increased cost and difficulty of treating conditions that have become more debilitating. While these outcomes have their profound effects on patients and their families, they also impede economic development to an extent that warrants the attention of national and international policy makers. Their leadership is crucial to the identification of affordable solutions for addressing brain disorders and to the enlistment of health care professionals in implementing such strategies. Brain disorders—neurological, psychiatric, and developmental—account for a significant proportion of the global burden of disease (see Chapter 2). Growing recognition of the prevalence of brain disorders, as well as the availability of cost-effective treatments, may now lead to the adoption of measures designed to achieve significant reductions in the disease burden due to these disorders. This is true even where resources for health care are limited. The strategies proposed in this chapter highlight the actions needed to achieve this goal and describe the additional analyses required for implementation and research. Though brain disorders have been largely neglected by health planners and practitioners throughout the developing world, a limited number of innovative programs have been implemented in countries and communities with varying levels of resources. In most cases, these programs have not been extensively evaluated for cost-effectiveness or long-term sustainability. However, a review of the existing evidence permits examination of these programs as preliminary models for the development of other programs and future planning (components of these programs are described in Chapter 3 and throughout Chapter 5, Chapter 6, Chapter 7, Chapter 8, Chapter 9 through Chapter 10).

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Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World A review of programs in several countries reveals that there are effective interventions for brain disorders. However, the existence of a successful intervention in one setting does not ensure its programmatic success in other, even similar, settings. It is clear that the design and implementation of such programs should be tailored to each country 's needs and resources. Successful programs will meet the neurological and psychiatric health needs of at-risk groups within both resource constraints and the local cultural context, and will reflect consideration of a country's or community's capacity to implement and sustain the interventions. Building on the evidence of a limited range of programs, this report proposes strategies for operational research in conjunction with the provision of care. Both therapies and health care delivery systems should be assessed and guided by an iterative process developed to improve clinical care in the local setting while maintaining its affordability. The six general strategies described in this chapter represent key steps toward reducing the burden of brain disorders in the developing world. They were developed by the committee based on a review of current literature, workshop deliberations, and background papers that provided the evidence for the discussion in Chapter 2 and Chapter 3. The first three actions can be undertaken now; the last three provide for the creation of better options in the future. Recommendations that address specific brain disorders are presented in Part II of the report and should be viewed in the context of the strategies presented here. REDUCING THE DISEASE BURDEN NOW Increasing Awareness Despite the existence of low-cost preventive and treatment interventions for many neurological and psychiatric disorders, the human, economic, and social burdens associated with these conditions remain high and are increasing in developing countries. In many cases the public and even the health community are unaware that effective treatments are available for certain disorders. Individuals with brain disorders and their families are subjected to stigmatization and discrimination generated by ignorance, misconceptions, and misplaced beliefs about certain of these disorders (see Chapter 2). In addition to care for those afflicted, community education is needed to counter these misperceptions and false beliefs. The knowledge that effective treatments are available is, in itself, an important tool for reducing the stigma. Awareness programs aimed at reducing stigmatization by disseminating information about available treatments have the added effect of stimulating health care-seeking behavior at earlier, more manageable stages of disease. Educational programs should be tailored to the needs of local communities. Local thinking can be changed by educational messages delivered in written materials, oral presentations in schools and workplaces, movies with clear mes-

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Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World sages, street theater depictions, and religious forums. In several developing countries, advocacy groups, educators, religious leaders, and traditional healers have been effective in delivering this information (see Chapter 3). Governments should facilitate and advance efforts aimed at increasing public awareness and understanding of brain disorders and, in the absence of community and advocacy groups, provide such messages. These efforts can be reinforced by laws that protect people with brain disorders from abusive practices, provide access to health care, and prevent discrimination in education, employment, housing, and other opportunities. 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. Utilizing Existing Health Systems Modest investments in and reorientation of existing systems of health care could make it possible to provide and monitor needed treatments for brain disorders and thus substantially reduce the associated disease burden. Integration of care for brain disorders into the primary health care system should occur as part of a national policy to provide comprehensive health care (see Chapter 3). Even in the absence of national policies, however, provision of neurological and psychiatric care should be encouraged, since dedicated professionals can effect important changes despite a limited set of interventions. Most countries have established specific disease-control initiatives and primary care infrastructures for infectious diseases and maternal and child health. Care for brain disorders should be incorporated into these existing programs. Additional resources will be required to train primary care staff in the prevention, diagnosis, treatment, and rehabilitation of brain disorders, and to provide diagnostic tools and essential treatments. Cooperative funding for this additional care should involve national and local governments, international nongovernmental organizations (NGO), and development agencies. Local support and participation should be sought from private physicians, nurses, social workers, traditional healers, and teachers. The basic components of comprehensive primary care for brain disorders include prevention, interventions, and community-based rehabilitation. Prevention should focus on reducing risk factors for these disorders in patients who are or could be at risk. Examples include perinatal and other injury to the brain, which can lead to developmental disabilities and epilepsy; vaccination and other measures to prevent infectious causes of developmental disability and epilepsy; and healthy diets and active lifestyles to protect against stroke. Interventions should include diagnosis and treatment of brain disorders. Where routine care is provided by trained community health workers, physicians

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Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World or specialist nurses at secondary centers should support primary care with regular shared consultations, supervision, and continuing training of community health workers. A reliable supply of appropriate medications should be maintained at the primary care center. Primary care providers must understand drug indications, dosages, outcomes, and side effects, and be able to monitor drug levels in the blood. They must also be trained to handle problems of compliance associated with long-term or lifetime use of medication. Community-based rehabilitation supports families in the appropriate care of patients to minimize further disability and encourage optimal development so that patients can resume lives that are as normal as possible. The role of primary health services is generally to provide guidance, knowledge, and encouragement to programs that are developed and maintained by the community. Since the diagnosis and treatment of some brain disorders demand specialized skills and facilities, primary care centers must have a direct link to a district hospital or other secondary facility for guidance and referral. While secondary and tertiary facilities are key to the provision of appropriate care, such facilities may prove too expensive for efforts aimed at expanding cost-effective routine case management. Routine care can be provided in primary care centers, overseen by skilled staff from higher-level centers. Oversight might involve monthly visits from a neuropsychiatric nurse or specialist, or less frequent visits supplemented by regular telephone review of cases. Urgent and severe cases would be referred to the district hospital for diagnosis and treatment, and then returned to the community primary care setting for maintenance therapies. The level of government investment in specialized care should be determined according to local priorities and resource availability, aided by the findings of operational research on cost-effectiveness. In general, the activities of a well-supported primary care facility (prevention, early recognition of potential cases, and routine case management) deserve high priority. 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. Expanding Use of Cost-Effective Interventions Perhaps the single most encouraging finding of this report is that highly cost-effective interventions exist that can be used to address the enormous disease burden due to brain disorders. As noted, however, the public and even health professionals are often unaware of effective treatments for these disorders, and few such interventions have been adapted for use in developing coun-

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Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World tries or communities. Evidence presented in Chapter 5, Chapter 6, Chapter 7, Chapter 8, Chapter 9 and Chapter 10 on specific disorders reveals a range of effective, low-cost interventions (see Table 4-1). To the extent possible, treatment programs for brain disorders should follow best-practice guidelines. Where this is not possible because of capacity and resource limitations, however, implementation of component practices is likely to be cost-effective relative to inaction. Initial demonstration projects that encompass these interventions should include evaluation of their cost and effectiveness in various geographic and resource settings to determine long-term implementation guidelines. Inadequate supplies of low-cost, widely available medications continue to handicap many developing countries. One-third of the world's population does not have access to medications that appear on the World Health Organization's (WHO) List of Essential Drugs (which includes treatments for brain disorders). About 90 percent of the essential drugs are off-patent and available at reasonable prices. The availability of these relatively affordable drugs could be increased through a combination of targeted aid programs and systematic improvements in the purchasing and distribution systems of developing countries. Every country needs to have in place an effective screening/approval mechanism for new drugs, a cost-effective purchasing mechanism, and an efficient distribution system, with local health care providers being able to get the drugs to the people who need them the most. To this end, model programs and international purchasing cooperatives should be encouraged. Education and rehabilitation strategies are likely to be most cost-effective when linked to existing public and/or private programs with similar objectives. This is especially true for strategies that seek to enable people with brain disorders to attend regular schools or training programs and obtain employment. 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.

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Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World TABLE 4-1 Cost-Effective Interventions for Management of Brain Disorders* Condition(s) Primary and secondary prevention goals Treatment and management modalities Developmental Disabilities Provision of folic acid and iodine supplements to women of child bearing age Expansion of vaccination programs and other proven methods of infectious disease control Early detection and treatment of infections that threaten the nervous system Implementation of prenatal, newborn, and developmental screenings Epilepsy Public education to destigmatize the disorder and to create awareness of available treatments Prevention and treatment of cystircercosis Reduce incidence of head injury, brain infection, and parasitosis Phenobarbital and phenytoin Low-cost carbamazepine and valproate Schizophrenia Public education to destigmatize the disorder Suicide prevention Relapse prevention Low-cost antipsychotic drugs, such as chlorpromazine and haloperidol Community rehabilitation programs for patients to improve social and occupational skills Psychosocial interventions to reintegrate patients into family and community life Major Depression Public education to destigmatize the disorder and to create awareness of available treatments Early identification and counseling of high-risk individuals Suicide prevention Relapse prevention Tricyclic antidepressants and, where available, low-cost SSRIs Adjunctive problem-solving and interpersonal psychotherapy Bipolar Disorder Early identification and counseling against substance abuse among high-risk individuals Relapse prevention Long-term treatment with lithium, carbamazepine, valproate, or other agents Adjunctive psychosocial treatments Stroke (Cerebrovascular Disorders) Use of public health and education strategies for lowering stroke-related risk factors (e.g., hypertension, smoking, diet, and exercise) Control of hypertension with low-dose thiazide, beta-blockers, and low-cost statins and ACE inhibitors Sulphonylureas with metformin if needed for diabetes * Supporting evidence for these recommended interventions is derived from research in both developed and developing countries. Specific discussion of the evidence base for each of these interventions appears in Part II of the report.

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Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World CREATING OPTIONS FOR THE FUTURE Applied Research Because of limited knowledge and experience in the delivery of care and interventions for brain disorders in developing countries, the integration of neurological and psychiatric care into health systems must be accompanied by rigorous evaluation. Both health care delivery systems and therapies should be tested and compared for cost-effectiveness in a variety of settings and refined on an ongoing basis. Planning, implementing, and evaluating interventions for the prevention, treatment, and rehabilitation of brain disorders will require a range of local and national research programs: Controlled trials to evaluate specific therapies, training programs, and models of care delivery; Surveillance of the incidence and burden of specific brain disorders; Monitoring of risk factors and the effects of interventions designed to reduce them; and Identification of and strategies to overcome nonfinancial barriers to implementation (e.g., inadequate training or misbeliefs about disease origins). In the interest of cost-effectiveness, surveillance may be restricted to obtaining data that can be used to improve the effectiveness of local and national care for brain disorders. Such data collection would address local environmental and genetic risk factors, the cost and effectiveness of treatment and rehabilitation interventions, the overall burden of brain disorders, and the gap between health needs and the services provided. Providing cost-effective neurological and psychiatric care that is judged to be at the level of “best practice” is a long-term goal. This goal may be best accomplished through an iterative process of evaluation and improvement directed by secondary or tertiary centers and at the national level. Involving nonhealth sectors—particularly education, industry, and environment—in the development of intervention and research programs can help advance progress toward this goal. 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. Capacity Strengthening Addressing needs for the care of brain disorders should be viewed as an essential component of a comprehensive agenda for public health interventions, research, and policy. To develop the leadership, training, and operational research

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Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World required to accomplish the first four strategies, the creation of national centers for training and research on brain disorders should be initiated. Staff members of these centers would be trained in all aspects of the care of brain disorders. They would serve as the trainers of staff at primary and secondary care centers, and as one level of support for primary care staff. Where existing centers already address infectious disease, maternal and child health, or other health problems, specific issues for brain disorders should be integrated into their initiatives. The specific projects undertaken at national centers would be expected to vary, depending on the needs, priorities, and resources of their host countries, but would probably include the following basic functions: Developing national priorities and strategies for integrating the care of brain disorders into existing health systems; Establishing locally relevant treatment and training guidelines for primary and higher-level care; Training medical professionals who supervise community-level care and who train community-level care providers; Supporting primary care centers by providing referral care, clinical guidelines, and regular clinical consultation for brain disorders; Conducting operational research on brain disorders—including demonstration projects with strong evaluative components —to inform the ongoing improvement of health planning and the delivery of care; Conducting surveillance to support health planning and policy development by national and local governments; Preparing and disseminating educational materials about brain disorders to health ministries, medical schools, community public health programs, physicians, primary care workers, traditional healers, schools, and workplaces; Building networks to enable researchers and health care professionals to exchange information via the Internet; Conducting operational research to evaluate the cost-effectiveness of available therapies and delivery systems; Sponsoring methodological development, epidemiological surveillance, and other locally relevant research concerning the risk factors for brain disorders as well as research on cost-effective models of care management; Contributing to the creation of medical and nursing curricula that are sensitive to local health priorities and cultural practices regarding health care and health-seeking behavior; and Collaborating with nongovernmental and community organizations that provide or promote health services for brain disorders. Strategic collaborations should be developed between centers in industrialized and developing countries. Centers should also be linked to international efforts, such as the Nations for Mental Health Initiative (sponsored by WHO, the World Bank, and Harvard Medical School) and INCLEN (the International

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Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World Clinical Epidemiology Network). Models for national centers with strong international cooperation include the Research Institute for Tropical Medicine in the Philippines, the Triangle Program at the University of Peradeniya in Sri Lanka, and the Ministry of Health in Uganda (see Chapter 3). Collaborative research with institutions in industrialized countries would provide an opportunity for complementary research activities that would utilize the advantages of each center while eliminating the misuse of limited resources for redundant efforts. The focus of a national center should be on training staff who provide support for primary care workers and conducting operational research on the delivery of cost-effective care for brain disorders in primary care centers. The national centers would also support secondary care centers in their capacity of overseeing primary care centers. Care would be necessary to avoid using limited resources for tertiary care or for expensive or sophisticated therapies that are unlikely to be cost-effective by serving the needs of most patients. Building on recent international commitments to increase access to the Internet and other digital technology, a centralized site should be established to serve as a repository of information on brain disorders. This gateway site should enlist the participation of professionals, public health organizations, and advocates throughout the world. It could include recent research findings, standardized versions of diagnostic and assessment tools, treatment and program guidelines for common disorders and different settings, evaluations of interventions for cost-effectiveness, and access to distance learning training packages. Additionally, the site could facilitate communication among health care providers, researchers, and policy makers at national centers and in the communities they serve. To encourage the training of medical specialists and researchers in the care of brain disorders and to strengthen local capacity in developing countries, the U.S. National Institutes of Health, Fogarty Center for International Training and Research Program, and similar programs at other research institutions should be established to provide training and initial research support. Under such programs, researchers, clinicians, and other health professionals from developing and developed countries could receive training in epidemiology, biostatistics, clinical trials, genetics, ethics, health policy, health communication, and culturally informed management. Long-term research and training collaborations with mentors in the United States and other countries could be established. To ensure that research and training agendas focus on important local issues, the experience of these investigators should be directly linked to—and, when possible, conducted in—the national centers for training and research. Long-term funding commitments will be necessary for these programs to build sustainable and high-quality levels of scientific expertise. Such centers can provide the knowledge needed to develop local policies, health care programs, and ongoing clinical and community studies.

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Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World Based on the findings presented in this report, opportunities for such collaborative research on brain disorders in developing countries might include the following: Evaluation of low-cost rehabilitation programs for mental retardation, disability after stroke, and long-term mental illness; Support for clinical trials of new drugs that offer promise for patients in developing countries; Research and clinical studies aimed at better understanding genetic risk factors for certain disorders, as well as the role of gene-environment interactions; Development of long-term follow-up cohort studies of the natural history of psychoses, prevention of stroke, prevention of developmental disabilities, and therapies for epilepsy; and Health systems research on pilot programs providing health care services, their sustainability over time, and their cost-effectiveness in different settings. 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. The Role of International Aid Integrating care for brain disorders and related operational research into existing health systems in developing countries will require broad international support and multiple funding sources. The sponsors of this report—the Global Forum for Health Research, the U.S. National Institutes of Health, and the U.S. Centers for Disease Control and Prevention—should spearhead this effort, along with research centers in other developed countries. Partnerships between institutions in developed and developing countries will be needed to establish health care services and support their development. Substantial and long-term funding will be essential to develop a worldwide network of national centers for training and research and to enable significant participation by researchers in developing countries. A priority for international aid efforts directed at brain disorders should be the creation of a mechanism for competitive funding of research, training, and institutional development. To create the basis for a sustainable program, initial investments must be committed by major donors to this international effort, and longer-term annual budgets must be established. This support should be tailored to specific country needs and capabilities. In-country analysis, coupled with timely, ongoing feedback and the flexibility to change programs as indicated, will be important in determining overall program targets, modifying implementation elements, and keeping programs efficient and effective. Support should also be maintained for a sufficient and plausible period

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Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World of time to show success in achieving program goals within the framework of the host country's development plan. The availability of short-term, goal-oriented, program-specific external funding should not be the primary factor driving the development of intervention programs. A broad spectrum of organizations should be enlisted for technical and financial support for this worldwide effort to provide comprehensive health care for brain disorders: National health and finance ministries; National agencies for international development (such as the U.S. Agency for International Development, Canadian International Development Agency, and Swedish Economic Development Agency); Foundations (such as the Wellcome Trust, Gates Foundation, Open Society Foundation, and Rockefeller Foundation); Nongovernmental organizations; Research and medical universities; Multilateral development banks; Industry; Professional societies; Advocacy groups; and Consumer and patient groups. 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 nongovernmental aid organizations—must commit initial investments to this effort, and longer-term annual budgets must be established. CONCLUSION With effective, affordable treatments available, current health care services can be extended to encompass neurological, psychiatric, and developmental disorders. For the most part, these treatments have been used infrequently, leaving millions of people to endure unnecessary hardship and impaired productivity. This report describes strategies for redressing this mismatch between opportunity and action. Specific diseases require specific responses, which this report identifies, for settings with limited resources. The above strategies provide a starting point for the delivery of affordable, accessible, and effective care. Each

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Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World needs to be evaluated and refined through an iterative process to meet good-practice guidelines and the varying needs of each community. International efforts will be needed to catalyze the actions required to reduce the impact of brain disorders now and those required to develop improved options for the future. Through such efforts, affordable reductions in the level of suffering from brain disorders can be achieved in the developing world.