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Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World (2001)

Chapter: 3 Integrating Care of Brain Disorders into Health Care Systems

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Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
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3

Integrating Care of Brain Disorders into Health Care Systems

This chapter describes the most promising vehicle for reducing the burden of brain disorders in developing countries: a comprehensive system of primary health care—primary care services supported by secondary and tertiary care facilities, physicians, and specialists. More detailed information on the challenges and opportunities for caring for specific brain disorders is presented in Part II of this report.

THE ROLE OF PRIMARY CARE IN ADDRESSING BRAIN DISORDERS

Over the last century, health care has increasingly been based on a public health approach that promotes health through prevention as well as treatment of disease. In developing countries, the need to provide affordable, accessible care for whole populations has guided the development of health systems based on primary care. The 1978 International Conference on Primary Health Care produced the Alma-Alta Declaration—a strategy promoting health for all that has been broadly accepted by both developing and developed countries. Under this strategy, primary health care is defined as essential health care based on practical, scientifically sound, and socially acceptable methods and technology, made universally accessible to individuals and families in the community through their full participation, and at a cost that the community and country can afford to maintain at every stage of their development, in the spirit of self-reliance and self-determination. Primary health care forms an integral part both of a country's

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
×

health system, of which it is the central function and main focus, and of the overall social and economic development of the community.[ 1,2]

Prior to the Alma-Alta declaration, an Expert Committee on Mental Health was convened by the World Health Organization (WHO) in 1974.[ 3] This committee recognized the scarcity of trained mental health professionals and the need for a tiered approach to treatment that is grounded in communities served by nonspecialized health workers and primary care nurses and physicians linked to specialist resources. Epidemiological research and programmatic development over the last 25 years have been guided by these findings.[4]

Delivery of health care in developing countries varies with needs and resources, as well as with the availability of various types of medical professionals. However basic the staff and facilities, primary care represents the point of entry for the vast majority of people seeking medical care—and for many people, their sole access to medicine.[5] Thus, primary care is the logical setting in which brain disorders can begin to be addressed. Including care for brain disorders in the primary care agenda represents the surest way to promote their prevention, early detection, and timely treatment.[4,6,7]

The incorporation of neurological and psychiatric care into the public health system is widely recognized as a way to improve coverage by providing a low-cost, accessible service that involves families and the community in patient care.[8,9,10 and 11] The integration of neurological and psychiatric services with primary health care is already a significant policy objective in developed and developing areas of the world.[12,13,14,15,16,17 and 18] Examples of this integration are found in low-income countries; one such example is described in Box 3-1. Other programs organized at both the national and local levels have been developed in India, Colombia, China, Iran, Malaysia, Tanzania, and Brazil.[19,20,21,22,23 and 24]

Additional features of primary health care systems contribute to their potential for reducing the impact of neurological, psychiatric, and developmental disorders. As noted in Chapter 2, very few medical specialists practice in developing countries (see Figure 2-2). In China, for example, there are approximately 10 psychiatrists for every million people,[22] 5 psychiatrists are available for the 30 million people of Tanzania,[ 25] and in Ethiopia, about 10 neurologists serve a nation of more than 53 million.[22] Most of these specialists practice in urban settings, further reducing their availability to rural populations. Thus, most people in need of treatment for brain disorders must receive it at community health centers.

As the gateway to health services in most middle- and low- income settings, primary care centers are well placed to recognize brain disorders and facilitate diagnosis and treatment of coexisting diseases. Research indicates that people with severe mental illness suffer higher-than-average rates of mortality from cardiovascular and respiratory diseases, cancer, and—in low-income countries—infectious diseases.[26,27,28,29,30 and 31] Additionally, findings show that patients

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
×

BOX 3-1 Integration of Mental Health Services and Primary Care in Guinea-Bissau

After Guinea-Bissau became independent from Portugal in 1974, the government established a decentralized, preventive health policy implemented through a nationwide primary health care system. Before developing a plan to add mental health care, researchers conducted epidemiological, sociological, and anthropological studies to determine the prevalence of certain brain disorders, understand community attitudes toward treatment of them by traditional and orthodox practitioners, and assess the abilities of village health workers to diagnose and treat mental disorders and epilepsy.

The researchers then established priorities for the training of Guinean health personnel to address psychiatric emergencies, including acute psychoses and agitation; depression and other neurotic disorders; and seizures, particularly those attributable to epilepsy. Training was focused on staff members (mainly nurses) at health centers, some of whom then trained and supervised volunteer village health workers. Flowcharts and role-playing vignettes were used to instruct personnel in the diagnosis and management of common mental disorders and seizures. After the seminar, the nurses received quarterly supervision focusing on case management and the use and distribution of medications.

The training improved the health workers' abilities to diagnose major mental disorders and epilepsy from 31 to 75 percent and their prescription of appropriate treatment for psychosis and depression from 0 to 75 percent. Nurses were even more successful in learning to recognize and treat epilepsy; after 4 hours of instruction, they were able to correctly diagnose 95 percent of cases of generalized epileptic convulsions and treated 90 percent correctly. In 1985, 2 years after the start of the program, WHO declared Guinea-Bissau to be the first “third world” country to succeed in integrating a social psychiatric program into its basic health care services. Each dollar invested in primary mental health care in Guinea-Bissau served more than 50 citizens for a year. The cost was modest because the program was designed to meet local needs, was built on a solid foundation of primary health care, and was monitored for improvement. Since then, structural adjustment programs have adversely affected the supply and cost of antipsychotics and anti-epileptic drugs. Though no analysis has been conducted, one could presume that the overall costs of the program have increased as a result of changes in the drug supply.

Continuing supervision by nurses and physicians from secondary medical centers was an essential component of program success. Many of the newly trained workers in the villages only began to implement their knowledge and skills after the initial visits with these professionals. This indicates the importance of supervision in the development of similar programs elsewhere.

Source: [22]

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
×

BOX 3-2 A Community-Based Rural Mental Health Program in Pakistan

A demonstration project in Rawalpindi began in 1985 with the following objectives:

  • To determine the feasibility of integrating mental health care into the primary care system.

  • To involve the community in the planning and delivery of mental health services.

  • To promote collaboration across sectors (e.g., health, education, local government, nongovernmental organizations [NGOs], religious healers).

  • To establish two-way referral systems between primary health care providers and specialists.

In the first phase of the program, researchers collected socioeconomic and demographic information. Then, primary health care staff were trained to provide care under supervision. Finally, a system of monitoring and evaluation of service delivery was put in place. Following adoption of a national mental health program by the government of Pakistan in 1987, the demonstration project was extended to all four districts of Rawalpindi (population 7.5 million).

Compared to districts with no mental health component, the four districts showed the following results:

  • Use of primary health care facilities (particularly by males) increased.

  • Pregnancy rates consistently declined.

  • Use of antenatal clinics increased and was accompanied by a significantly higher rate of assisted deliveries; infant and maternal mortality rates were reduced by nearly one-third and one-half, respectively.

  • Immunization rates for children rose steadily.

  • Detection rates of mental illnesses were significantly higher.

As a result of these accomplishments, the incorporation of mental health care into primary care has been made a national priority and has been assigned specific funding. Additional benefits of this initiative include the indigenous development of teaching and training modules and information systems for use at all levels of primary health care, as well as the establishment of referral mechanisms.

Sources: [38,39,40 and 41]

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
×

with psychiatric disorders seek care from primary providers with greater-than-average frequency because of both increased physical illness and somatization of psychiatric illness.[32,33,34,35,36 and 37] Moreover, because they work in the community, primary care teams are well placed to recognize factors such as stigma, family problems, and cultural factors that affect treatment for brain disorders.

DEVELOPING A SYSTEM OF CARE

Primary Care

Provision of services for brain disorders in conjunction with established primary care services builds on existing human and financial resources to promote practical clinical and social outcomes for these disorders.[ 52] Limited yet significant evidence from developing countries that have established such programs indicates that a feasible and cost-effective means to meet this goal may be to provide diagnosis and, in many cases, treatment for brain disorders at the first point of entry into medical care, in conjunction with secondary and tertiary support.[ 43,44 and 45] Such a system of care should be staffed by appropriately trained personnel whose level of training and responsibility will vary with the needs and resources of different communities and countries and is best determined by rigorous operational research. Limitations in the diagnostic and treatment skills of nonspecialized providers of mental health care have been observed in several studies in both developed [46,47,48,49 and 50] and developing countries.[51,52,53 and 54] To guide the development of efficient and effective training methods, similar such assessments must be made as programs develop. Following are descriptions of several essential personnel in such systems.

Community health workers. In some communities, community health workers provide primary care services. These workers need a minimum of some high school education; basic training in health care; and additional training in the diagnosis and treatment of brain disorders, the dispensing and monitoring of medication, support for community rehabilitation, prevention of disorders, and means of reducing stigma and discrimination. Their role is to recognize patients who may need neurological or psychiatric care, to consult regularly on such cases with a specialist nurse or physician, and to provide care under the supervision of a physician or specialist at the closest secondary care center.

Nurses. In some communities, nurses provide primary care services under the supervision of a physician or specialist at the closest secondary care center (see Box 3-2). Their qualifications typically include a high school education, general nursing training, and some specific training in neurological and psychiatric care. Specialist nurses have extensive training in neurological and psychiatric care, and in some countries provide oversight of primary care clinics, making monthly or other regular visits.

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
×

General physicians. Since it is not possible to assign physicians or specialists to many primary care facilities, physicians and specialists at secondary and tertiary centers have an essential role in the planning, training, and oversight of each primary care center. The same physicians provide care for severe or complex cases and, whenever possible, initial diagnosis and treatment of critical or chronic cases.

Specialists. Specialists in neurology, pediatrics, psychiatry, and related fields, such as psychology, physiotherapy, social work, occupational therapy, and speech therapy, have important roles. They can contribute to the formulation of relevant health care policies, bringing to bear their specialized knowledge about cost-effective methods of control, treatment, and rehabilitation. They may also oversee policies and procedures at health care facilities and staff training programs.

In several developing countries, mental health care has been organized in line with the principles of public health.[22,24,42,55] Key features of the WHO model guiding primary mental health care may be adapted to address the broader range of brain disorders and may include the following objectives[56]:

  • Formulation of a national policy on brain health and establishment of a national or regional brain health department;

  • Financial provision for the employment and training of personnel;

  • An adequate supply of essential medicines;

  • A network of facilities linked by appropriate transportation;

  • Data collection to support planning of programs, monitoring of outcomes, and epidemiological research;

  • Integration of care for brain disorders with general health services and collaboration with relevant nonmedical agencies;

  • Use of workers without specialization in brain disorders, including primary health care workers, nurses, medical assistants, and physicians, for basic care; and

  • Training of brain health professionals who train and support nonspecialized health workers.

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
×

BOX 3-3 Role of Nurses in Primary Health Care in South Africa

In the mid-1990s the Hlabisa district in KwaZulu-Natal, South Africa, used a nurse-led primary health care program to target four major noncommunicable diseases: hypertension and diabetes (key risk factors for stroke), as well as epilepsy and asthma. Nurses at primary care clinics in the mostly rural region coordinated management of these disorders with a goal of increasing adherence to treatment.

The Hlabisa district, with a population of 250,000, was served in 1993 by a 300-bed district hospital, 10 satellite village clinics staffed by nurses and visited once monthly by a doctor, and a nurse-staffed mobile clinic service. The Zulu population lived in scattered rural homesteads and was dependent on subsistence farming, pensions, or migrant work. Patients in the district could attend the primary care clinic of their choice for a fee of US$0.75 per consultation, which covered tests and prescribed drugs.

Nurses at the primary care clinics were trained to use diagnostic and treatment algorithms for hypertension, diabetes, asthma, and epilepsy, based on the available evidence, clinical experience, and, when available, WHO protocols or national guidelines adapted to local conditions. The algorithms provided clear descriptions of essential aspects of diagnosis, monitoring, and treatment adherence for each disease.

Upon seeing a new patient with one of these disorders, the nurse made a provisional diagnosis using the algorithm and recommended a plan for initial management, including referral to the district hospital if necessary. The patients were subsequently seen by a doctor at the primary care clinic to confirm the diagnosis and check for complications. Complex cases werre reviewed by a doctor until they were under control. Once a patient's condition was controlled, he or she received a prescription card that could be used to obtain medications for 6 months, after which time the case was reviewed and the treatment adjusted, if necessary.

Primary care nurses were authorized to prescribe a limited list of drugs for hypertension, asthma, and non-insulin-dependent diabetes. Doctors prescribed additional medications for these conditions, if needed, as well as all drugs for insulin-dependent diabetes and epilepsy.

During the first 2 years of the program, nurses using the protocol achieved a control rate of 68 percent for hypertension cases (this later increased to 92 percent); for non-insulin-dependent diabetes, 82 percent (which increased to 96 percent); and for asthma, 84 percent (which increased to 97 percent). Doctor-led treatment controlled 80 percent of epilepsy cases and 83 percent of cases of insulin-dependent diabetes; thereafter, these cases were managed by nurses. Adherence to treatment, as

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
×

measured by patients' reports, occurred at a rate of 79 percent after the first visit and increased to 87 percent after a later visit.

This model demonstrates that nurses supervised by physicians can manage some common brain disorders appropriately, even in a resource-poor setting. The simplification and rationalization of diagnosis and treatment allowed patients to be seen and their conditions managed through local clinics. This approach made optimal use of limited health care resources, and provided accessible care for chronic, often asymptomatic disorders, thereby increasing patient adherence to treatments.

Source: [57]

The Role of Secondary and Tertiary Care

Primary care centers are limited in their ability to adequately diagnose and treat certain brain disorders. The complexity and chronicity of some of these disorders necessitates access to medical expertise and technology that are not ordinarily available in a primary care setting, particularly in developing countries.[58,59 and 60] When possible such cases can be recognized in a primary care setting and referred for early intervention to a higher secondary level of care to provide the best chance for successful treatment or rehabilitation. Early recognition and intervention can prevent the costly complications that arise when these more serious conditions are not addressed until they become critical.[61,62]

Secondary care is provided in district or regional hospitals. These are usually staffed by several general physicians, medical technicians, and nurses. These facilities are capable of treating severe or complex medical conditions and may contain computed tomography (CT) scanners, heart monitors, incubators, and laboratory facilities for blood analysis. District and regional hospitals can also support care for a broader range of illnesses than can be treated in primary care alone. Neurologists in India have proposed that district hospitals provide essential medicines and mobile care teams to improve the ability of community health care workers to identify, diagnose, and treat epilepsy.[63] This approach could be adapted to include care for schizophrenia, depression, and other disorders, along with the provision of periodic and continued supervision and training.

Secondary care centers could also provide technical and administrative support for primary care clinics in their district or region. Continuing education, which has been shown to improve the performance of community health workers, should include instruction on the symptoms of major brain disorders and ways to help patients maintain proper treatment.[ 24,64,65] This training could be provided by medical professionals from secondary facilities who, during regular visits to primary care centers, also monitor the care provided by primary care workers and consult on specific cases.

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
×

Tertiary care is the most specialized form of diagnosis, treatment, and rehabilitation, and is often provided in teaching hospitals. Tertiary care hospitals also serve as facilities for clinical research, collection of epidemiological data, and the creation and distribution of health educational materials.

Because resources are limited and the operating costs of tertiary centers are high, most developing countries can support only a few such centers. However, studies conducted at these influential institutions —on such topics as identification of risk factors, prevention strategies, and treatment options, can provide the evidence base for determining national health priorities and community health care. The training curricula developed at these centers can also be adapted for health care personnel at secondary and primary care levels.[66]

Health systems vary immensely within and among countries.[67] The capacity of the current health care infrastructure, local health priorities, and financial resources will play a major role in determining the extent and speed with which neurological and psychiatric care can be incorporated into the primary care system. In many communities, primary care providers have rudimentary training and few essential medicines and diagnostic tools. Yet even under these circumstances, primary care may have the ability to fulfill its mission, given sufficient support, training, and supervision by medical professionals at secondary and tertiary facilities.[22,24,55,68,69]

BUILDING CAPACITY THROUGH TRAINING

Training of staff is a key aspect of expanding existing health care services to address brain disorders. Since the responsibilities of community health workers, nurses, and physicians vary widely, the training must be tailored to the needs of specific countries or regions. A general training framework would be based on existing evidence regarding the provision of health care. The existing body of evidence is described and cited below. However, additional operational research is needed to identify cost-effective ways of training health care personnel at all levels to provide appropriate care for brain disorders.

Community health workers. As front-line caregivers in countries such as Botswana,[11] Guinea Bissau,[22] India,[70] Iran,[71] Nepal,[72] and Tanzania,[55] community health workers need to receive both basic training and regular continuing education in basic diagnostic skills and basic treatment and rehabilitation protocols. Basic training in neurological and psychiatric care should cover general skills, such as interviewing a patient, recording appropriate information, referring a patient to a higher level of care, and consulting with a physician who oversees operations, diagnosis, and management of specific disorders, including the use of medication and monitoring for side effects. Such training should also address daily responsibilities, increase awareness, and improve management skills while avoiding unnecessary details and technical jargon. WHO training manuals are a useful source of training guidelines.[73,74]

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
×

Although it should be directed more toward improving skills than enhancing knowledge, training should raise health workers' awareness of the importance of psychosocial factors in health and disease. Flowcharts and simple screening devices can be effective in training primary care providers to recognize developmental disabilities,[ 75] depression,[33] schizophrenia,[10] and epilepsy.[43] Health care workers can be trained to use a simple screen to detect significant deviations from developmental norms or milestones as well as sensory or motor impairments, such as cerebral palsy.[70,76,77 and 78] They can also be trained to identify common mental disorders [20] and stroke.[78] However, it is essential that diagnostic and management tools be adapted to local conditions.[43,70] It is also important to recognize that primary care providers are likely to find assessment tools, such as symptom and behavior checklists more useful than instruments (such as intelligence tests) that do not indicate the action needed.[79] It is important to note as well that in many cases, primary care providers should be trained to recognize the need for referral to more specialized treatment rather than trying to make a diagnosis.

Nurses. Primary health care in low-income countries has always relied heavily on nurses, but they could play an even larger role in the system of care envisioned here (see Box 3-3). Physicians in secondary care facilities in developing countries may spend only a few minutes per patient visit. Under these conditions, it is unrealistic to expect them to diagnose any but the most overt cases of brain disorder. Nurses trained to conduct more detailed first interviews may be better able to recognize common mental disorders, such as depression, and to identify risks for stroke, such as hypertension and diabetes.[57,80,81]

In regions where there are few physicians in primary care, specialist nurses may be called on to diagnose and treat brain disorders; however, such efforts are likely to fare best if overseen by neurologists and psychiatrists. In a specialized psychiatric treatment center, periodic visits from psychiatrists were found to improve the ability of psychiatric nurses working in the Botswana bush to care for chronically ill patients, a finding that may apply in the primary care setting as well.[82] Other experience indicates that primary care nurses, using appropriate guidelines provided through a program of continuing education, can also provide effective management for mental disorders.[62,65,83]

Primary care nurses also have many opportunities to promote brain health, and it is appropriate that they receive instruction in simple techniques for managing emotional distress (e.g., physical activity, talking over problems, assertiveness training, and relaxation techniques), and for giving advice on cessation of smoking and adhering to a healthy diet Similarly, providing mental health education to nurses who serve as birth attendants could help improve the rates of diagnosis and treatment referral for postpartum psychosis and severe depression.

Physicians. Physicians get most of their medical training in teaching hospitals, where tertiary health care is emphasized. Since the cases that present in a hospital are generally more complex and may be further complicated by noso

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
×

comial factors, physicians who supervise primary health care personnel must have experience with the diagnosis and treatment at that level.[ 15,26,61] Training should emphasize preventive measures against such brain disorders as mental retardation and stroke, and provide interview skills that can facilitate the diagnosis of depression and other psychological disorders.[5,84] General physicians should be able to evaluate and treat common neurological and psychiatric disorders as well as respond to emergencies, such as head injury, stroke, epileptic seizure, and psychotic episodes. A program to improve training in neurological disorders for primary care physicians in developing countries was launched in 1997 by WHO and the World Federation of Neurologists.[85,86 and 87]

Physicians who supervise or train other primary care providers also need instruction in effective communication skills in order to develop the skills of community health care workers. The supervising physician should regularly work alongside health workers and receive case referrals from them. Given the increasing recognition of the common origins of many brain disorders, psychiatrists should be conversant in neurology and exposed to patients with neurological disorders, while neurologists should have a basic command of psychiatry and experience with patients suffering from major mental disorders.[88]

COLLABORATION WITH OTHER HEALTH AND NONHEALTH SECTORS

The formation of alliances between public health care providers and private physicians, schools and educators, community-based rehabilitation (CBR) programs, other community organizations, and traditional healers is another way of improving health care.[89] Their roles in primary care are discussed below.

Private Physicians

Decentralization of health care services in many developing countries has been required by numerous development programs over the last two decades. The growth in private health care facilities as a result of these initiatives has created an important role for this sector in addressing brain disorders. In India, private practitioners are estimated to provide half of all primary care, and up to 80 percent in some states.[90] Many of the rural and urban poor consult with private practitioners because of their relatively low consultation fees and accessibility, as well as negative perceptions of the quality of public health care. The recent imposition of user fees for public health care services in India is likely to increase the proportion of care provided by private practitioners.

In the least-developed regions of India and sub-Saharan Africa, which tend to be underserved by government-provided health care, the principal providers of health care are community-based NGOs, which offer such care as part of a broader development agenda. Some NGO providers focus on specific psychiat-

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
×

ric and neurological problems, attempting to fill needs unmet by either public or private providers.[91] In many developing countries, outreach to and participation by private physicians will be important to the success of public education, prevention, and treatment initiatives aimed at brain disorders. Comprehensive operational research to establish appropriate training requirements, cost-effective interventions, and future research needs will be most useful when the services provided by private physicians are considered jointly with public health system measures.[92,93]

Schools and Educators

When developmental and other brain disorders occur in children, educators may be the first to recognize them. Such vigilance can be encouraged through consultations between teachers and primary care providers. Research is needed on how teachers can best facilitate the early diagnosis and treatment of brain disorders in children. Schools can also include neurological and mental health education, as they do physical health education, in their curricula.[5] In India and Pakistan, school children who have been taught basic skills play an important role in identifying adult relatives with epilepsy, schizophrenia, and other disorders and bringing them to medical attention.[92]

Community-Based Rehabilitation Programs

CBR programs are a low-cost way to coordinate medical guidance and community resources in the rehabilitation of disabled people, allowing them to live as normally as possible.[94,95] Some of the most successful CBR programs work to mainstream disabled children into public education at the earliest opportunity and to assist them in the transition from school to employment (see Chapter 6 for a detailed discussion of CBR for developmental disabilities). In addition to providing long-term care and support, CBR addresses the isolation and stigma experienced by disabled people. The program can be linked to and supported by institutional and hospital-based programs, thereby creating a comprehensive rehabilitation service (see Box 3-4). Additionally, CBR programs should consider the needs of both children and adults who require mental and physical rehabilitation.

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
×

BOX 3-4 Psychiatric Rehabilitation Villages in Tanzania

Tanzania, a country that spends only about US $1.33 per capita annually on health care, has created several self-sustaining facilities for the care of people with chronic psychiatric disorders. Modeled after the pioneering Aro Village in Abeokuta, Nigeria,[96] the Tanzanian villages were established in the late 1960s to provide a socially stimulating environment for patients who require extended rehabilitation. Rehabilitation villages offer psychiatric services similar to those available in hospitals, but in an environment intended to duplicate the social and economic milieu of a rural community. By providing agricultural plots where patients can be engaged according to their abilities and stages of motivation, the villages encourage patients' personal growth and independence.

Hombolo psychiatric village, the first to be established in central Tanzania in 1969, was built by patients with assistance from the staff of Mirembe Psychiatric Hospital, a large mental health institution. During the 1970s and 1980s, 11 psychiatric rehabilitation villages were developed in Tanzania to meet growing demand, and more villages have followed. In 1992, the villages cared for 450 patients.[23]

Vikuruti village, located 18 kilometers south of Dar es Salaam on 75 hectares of land, is a typical rehabilitation village. Most of the land is used for horticulture, coconut and citrus plantations, and animal husbandry. The village houses 32 patients in eight cottages and has a kitchen, dining hall, three staff houses, offices, and a hostel to house students and patients' relatives, who are encouraged to visit and take part in the activities.

The afflictions of patients include schizophrenia, alcohol dependence syndrome, epilepsy complicated by psychotic illness, and bipolar disorders. The staff has three agricultural and livestock field officers, two nurses, nursing assistants, three artisans who perform occupational therapy, a driver, and three security staff, all of whom are supervised by a psychiatrist at Muhimbili University College of Health Sciences in Dar es Salaam. Traditional healers may play a role in therapy if a patient requests it. With the assistance of the psychiatrist and a medical social worker who visit weekly, the team works with patients and relatives on rehabilitation plans and counseling support. Patients participate in the village's token-economy system and take part in the management of community life, including the election of a village government.

Patients generally reside at the rehabilitation villages for 3 months to 2 years, during which time they make more rapid progress than similar patients in hospital environments. Cost-effectiveness studies would be useful to review alternative uses of resources and consider recruiting of additional professionals.

Sources: [23,96,96]

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
×
Community Organizations

Although relatively few and often poorly funded, local groups can facilitate mutual support and sharing of experience among patients, families, and caregivers. NGOs and parent groups together can establish facilities, such as vocational training centers, day care centers, and supported living facilities, most of which are staffed by community volunteers. Groups such as the Kenya Association for the Welfare of Epileptics and Zimcare, an organization for the support of persons with mental handicaps in Zimbabwe, can work to change social attitudes and draw the attention of policy makers to patients with disabilities.

Traditional Healers

In some countries, many people—perhaps a majority—seek care for brain disorders from traditional healers.[98,99 and 100] These practitioners are therefore likely to influence health care delivery in the developing world for some time to come.[5,101,102] Although a scientific basis and empirical evidence of their effectiveness may be lacking, there is little doubt that some aspects of traditional healing benefit patients.[103] Most community health workers and other care providers in developing countries come in regular contact with traditional healers and are aware of their practices.[89,104,105] They may even rely on traditional healers for their own mental health care [8] and experience conflict between traditional and biomedical explanations of disorders.[103,106]

In determining their relationship with traditional healers, providers of biomedical care must address several issues. First, they must determine how to protect patients from intrinsically harmful traditional practices. Patient education about the negative effects of some traditional treatments can be an important role for physicians, nurses, and health care workers. Second, they must establish dialogue to determine whether patients are simultaneously taking orthodox and traditional medicines.[ 107] Some herbal medicines have pharmacological effects similar to those of orthodox medicines and may thereby inadvertently cause overdose or dangerous side effects. Conversely, traditional practices that are benign or potentially helpful [108,109,110 and 111] can be incorporated into protocols for care.[112] Malaysia has established a specific research framework to evaluate traditional medicines.[113,114]

Some developing communities have determined that the most effective route to good health care lies in creating alliances between biomedical care providers and traditional healers.[115] In the mid-1980s, such informal collaborations emerged in Brazil.[ 16] In Nepal, where allopathic psychiatric care coexists with traditional healing, healers attend community education courses on mental health that are organized by nongovernmental organizations (NGOs).[72] Through such courses in Nigeria, healers have been trained to recognize and manage cases of psychiatric disorder and refer them to community health work

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
×

ers.[105] In Zimbabwe, psychiatrists work with the two leading associations of traditional healers to assist in HIV/AIDS prevention and treatment. Operational research on such collaborative efforts may identify opportunities in other countries seeking to facilitate constructive cooperation with traditional healers.

Where resources for primary health care are extremely limited, traditional healers, who vastly outnumber community health workers, can be recruited and trained to provide primary care.[96,116,117 and 118] Additional training for those who currently provide care can be the fastest way to increase the capacity to treat brain disorders.[ 22,92]

THE COST OF INTEGRATING SERVICES

Current estimates of the significant disease burden imposed by brain disorders (see Chapter 2), along with evidence of cost-effective interventions that have been implemented in a limited number of health care programs in developing countries, argue for action to reduce this burden. The existing limited evidence, coupled with further operational research, can guide public investment to permit the expansion of primary health care to include care for brain disorders.[92,119,120] Timely investments in personnel, training, drugs, and infrastructure are key to preventing or reducing the impact of these disorders on individuals, their families, and society. Treatment of these disorders is also the surest means of reducing the stigma associated with them and replacing archaic beliefs with contemporary understanding.

Determination of the appropriate level of effective, affordable care for brain disorders should be based on cost-effectiveness analyses for a range of treatments in different systems of health care. Considerable variability among communities in their perception of neurological and psychiatric illness, their expectations of what medical care should provide, and the cost of drugs and other services complicates choices for good-quality, affordable services. Optimal approaches to treatment and prevention need to reflect local costs and benefits.

Evaluations of cost-effectiveness may be based on costs to the patient alone or may include costs to the family and the community. The cost to an individual of being unemployed is direct and measurable; therefore, when treatment permits a return to employment, this benefit is measurable as well. But to society, the loss of productivity due to the disability of a single worker may be small if unemployment is high. Where treatments can be shown to benefit society and the economy as well as individuals and their families, the case for treatment will be more compelling.

Health care economists generally agree on the methodology for establishing the cost-effectiveness of alternative approaches to health care delivery.[ 120,121 and 122] Briefly, such analyses compare interventions for health promotion, prevention, diagnosis, and treatment and rehabilitation on the basis of outcome and cost. They also evaluate different systems of primary care, including the routine use routine use of primary care workers with oversight from secondary

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
×

routine use of primary care workers with oversight from secondary care facilities. These assessments should be addressed from the perspective of the community; thus, they should employ a common descriptive terminology and express the costs of health care in terms of purchasing power.

Analyses depend on data, however, little of which is currently available. Appropriate databases for systemic analyses of cost-effectiveness in primary care can be built through a review of existing data, followed by establishment of a multinational collection of information based on a common framework. New information should be collected in local studies that include comparisons of financing, costs, and service utilization, as well as rigorous assessments of cost-effectiveness.[ 123]

Once neurological and psychiatric care have been incorporated into a system of health care, maintaining a cost-effective program will require monitoring, evaluation, and comparison with new alternatives. Research to establish the cost-effectiveness of treating brain disorders will be a key element in persuading governments, donor missions, and NGOs that incorporating these services into health care programs is affordable and necessary for the health and well-being of individuals, families, and the community.

BOX 3-5 Cost-Outcome Study in India and Pakistan

A recent study in India and Pakistan developed and tested methods for economic analysis of community health programs. The Pakistan program was described in Box 3-2. Researchers screened four rural populations (two in India and two in Pakistan) for psychiatric morbidity to estimate the prevalence of common mental disorders and the patterns of health care-seeking behavior. Between 12 and 39 percent of participants at each site were found to have a diagnosable mental disorder and were invited to seek treatment. They were then assessed prospectively as to their symptoms, disability, quality of life, and resource use.

In three of the four locales studied, treatment of mental disorders improved patients' symptoms, reduced their disability, and increased their quality of life, all of which resulted in reduced costs to the overall economy. The evaluation was based on data on the relative costs and benefits of alternative responses to mental disorders in the community and thereby identified opportunities for improvement in the health care system.

This general study design could be adapted for use in other countries. To that end, the authors prepared a brief set of guidelines for the economic evaluation of mental health care. These guidelines and sample surveys appear in Appendix D.

Source: [90]

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
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BUILDING RESEARCH CAPACITY THROUGH COLLABORATION

The expansion of primary health care services to include cost-effective neurological and psychiatric care demands an increased capacity not only for delivery of care, but also for research. A robust research agenda to inform and support primary care should include operational studies to test techniques and strategies for their effectiveness in the local setting, along with epidemiological surveillance. Such a program could also promote the development of an international cadre of neurological and psychiatric professionals focused on these issues in developing countries. A successful model for such a research program, the WHO Special Programme for Research and Training in Tropical Diseases, could be adapted for this purpose (see Box 3-6).

BOX 3-6 The WHO Special Programme for Tropical Disease Research

The WHO Special Programme for Research and Training in Tropical Diseases (TDR) was established in 1975 through a joint effort of the United Nations Development Programme, the World Bank, and WHO. TDR has produced many successful partnerships in a broad variety of international organizations, and its collaborators include more than 5,000 scientists in 160 countries.

TDR acts as a global facilitator of research and training in tropical disease management by selecting, guiding, funding, and developing research on 10 major tropical diseases: malaria, schistosomiasis, African trypanosomiasis, leishmaniasis, dengue, lymphatic filariasis, Chagas disease, onchocerciasis, leprosy, and tuberculosis. The program 's goal is to support the development of safe, acceptable, and affordable methods of prevention, diagnosis, treatment, and control of target diseases, as well as training that strengthens the capability of developing disease-endemic countries to undertake the research required to develop new methods and strategies for disease control.

Partners with TDR in fulfilling these goals include governments and ministries of health in disease-endemic countries such as Cameroon, India, Malaysia, and Nigeria; research institutions, including the Liverpool School of Tropical Medicine and the London School of Hygiene and Tropical Medicine; NGOs, such as the Wellcome Trust; and industry. Financial contributors include both developed and developing nations and an international roster of foundations and associations.

Research and training activities are organized into four main areas, each overseen by a committee. The section on Basic and Strategic Research funds the use of cutting-edge technology and social, economic, and behavioral research to develop tools for long-term control of target diseases.

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
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Product Research and Development focuses on the identification of novel drugs, vaccines, and diagnostics for target diseases, as well as their development from clinical trials through to regulatory approval and registration. Intervention Development and Evaluation supports the evaluation of existing programs related to target diseases and the development, implementation, and evaluation of new control strategies. In the area of Research Capability Strengthening, TDR seeks to fund institutional development and technology transfer in countries where its target diseases are endemic. It also aims to build links between institutions in endemic and nonendemic countries, train individual researchers and research groups from disease-endemic countries, and strengthen computing capabilities and Internet access in these countries.

Scientists from all countries, especially those where TDR diseases are endemic, are eligible to receive research and training grants from the program. Funding is available for a wide variety of purposes, including collaborative research, project development, research capability strengthening, and research training.

Source: [124]

In addition to large-scale international collaborations such as TDR, efforts to increase health research capacity in developing countries include national and local programs that focus existing scientific expertise on particular health problems. For example, the Research Institute of Tropical Medicine has established institutional links between the University of the Philippines and several governmental and nongovernmental organizations. A similar program of transdisciplinary research collaboration among experts in Uganda was found to be a low-cost means of increasing research capacity on AIDS.[125] Participants in collaborative efforts to build the capacity for health care delivery and operational research can also contribute to the improvement of national and local policies and programs. Support from the Carnegie Corporation funded health and behavior research training in East Africa out of the University of Nairobi and University of Dar es Salaam from 1990 to 1999. Similar research training was supported by the Freeman Foundation in Southeast Asia in conjunction with Harvard Medical School.[126]

Several participants in collaborative efforts to build health care research and delivery capacity in developing countries have emphasized the importance of involving local researchers and policy makers in program design and implementation.[66,127,128,129 and 130] A key means of accomplishing this goal is through the training of local researchers to assume responsibility for directing and sustaining national research programs. Moreover, as members of USAID's Applied Diarrheal Disease Project have discovered, such training programs afford increased

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
×

access to local knowledge that can immediately improve researchers ' ability to apply their findings productively.[128] The ultimate goal of training, however, should be the establishment of research institutions in developing countries that can grow, mature, and participate as equals in international networks of scientific exchange.[33,131]

Two principal means of collecting epidemiological data for health care planning purposes are surveys and record keeping at the primary care level.[113] Given the diverse means by which people in developing countries obtain primary care, surveys that attempt to determine the extent to which patients with brain disorders make use of various health care providers,[132,133] as well as surveys of the prevalence of specific neurological and psychiatric disorders among the general population, should prove especially useful. Research on pathways to health care can reveal areas for improvement in the efficiency of treatment and referral in health care systems.[105,132,133] A program designed to improve the basic epidemiological research skills of clinicians in developing countries for such research efforts is the International Clinical Epidemiology Network. The program and suggested mechanisms for its role in research for brain disorders are described in Box 3-7.

POLICY IMPLICATIONS

Policies designed to support the expansion of health care services to address neurological, psychiatric, and developmental disorders in developing countries will need to be advanced at every level of governement, from local communities to international bodies. This section examines the national and local policy implications of addressing brain disorders in developing countries, while the next section describes potential international contributions to this effort.

National Policy

In formulating health care policy, governments rarely start with a clean slate. It is therefore important not only to appraise national needs for the care of brain disorders, but also to identify resources and strengths that can be directed toward new goals. Experience even in resource-poor countries such as Botswana,[11] Guinea Bissau,[59] and Tanzania [55] indicates that when a robust national policy of primary care is in place, it can be expanded successfully to address additional types of care. As discussed previously, established mental health programs represent the logical starting point for addressing a broader spectrum of brain disorders. Additionally, where collaborative efforts exist between the health and nonhealth sectors (e.g., education, environment, social welfare), these relationships should be reinforced and expanded.[ 5,61,70]

Many developing countries have made significant investments in specific disease-control initiatives and in primary care infrastructure for infectious dis-

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
×

eases and maternal and child health.[98,99] They have also expanded these programs to meet broader health care needs. In Iran, for example, a program of childhood immunization that began as a vertical, stand-alone project achieved greater success when integrated into the existing system of primary health care.[ 100] Such programs of integrated care could, with appropriate expertise and oversight, be augmented to include the prevention, identification, treatment, rehabilitation, and surveillance of brain disorders.

BOX 3-7 The International Clinical Epidemiology Network

Since 1980, the International Clinical Epidemiology Network (INCLEN) has worked to establish training programs in developing countries through which clinicians can learn basic epidemiological research skills. The organization specifically seeks to improve physicians ' abilities in the following areas:

  • Making clinical decisions when treating patients;

  • Analyzing the cost-effectiveness of interventions;

  • Designing clinical trials of medicines and treatments;

  • Evaluating diagnostic tests; and

  • Appraising the medical literature.

The ultimate goal of this effort is the creation of a worldwide network of physicians, statisticians, and social scientists to build and sustain institutional capacity for clinical epidemiology in research and medical education.

To date, INCLEN has helped found and support more than 31 clinical epidemiology units (CEUs) in 16 countries and has trained more than 300 clinical epidemiologists and health specialists. They in turn train students and assist their colleagues with research projects; many also serve as advisors to ministers of health in their countries. With the founding of the INCLEN Trust in 2000, the organization has adopted a governing structure based in the developing world and spearheaded by regional leaders of its units in Africa, India, China, Southeast Asia, Latin America, and the Mediterranean.

INCLEN represents a promising potential collaborator in efforts to integrate care for neurological, psychiatric, and developmental disorders into existing heath care services in developing countries. One starting point might be the few CEUs that currently offer training on epidemiological strategies specific to mental health. Programs at these sites could be expanded to include other topics relevant to brain disorders, then reproduced throughout the established INCLEN system.

Sources: [134]

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
×

An effective system of primary care requires periodic and continued supervision and oversight from medical specialists, a system of referral, and guidelines for good practice. At the national level, policies to implement the integration of care for brain disorders into primary health care must address a variety of issues, including those detailed below.

Strategies for prevention. Prevention is generally the most cost-effective means of reducing disease burden. Two basic approaches to preventing brain disorders require the support of national policy: public education and reduction of known risk factors.[58] Although education occurs at the community level, national policy should support the training of community health workers in educating their clients about the nature and causes of brain disorders. Such programs can promote prevention by alerting the public to avoidable risk factors, and also reduce the stigma associated with such disorders as epilepsy and schizophrenia.

National public health policy should seek as well to control known and preventable risk factors for brain disorders, many of which are common in developing countries (see Part II for discussion of risk factors associated with specific disorders). Likewise, national governments can lead efforts to identify and strengthen factors that protect against these disorders. For example, future research could include studies to determine whether literacy campaigns, such as the National Literacy Campaign in northern India, effectively discourage risktaking behavior or increase the use of appropriate health facilities for neurological and psychiatric conditions.[141]

Strategies for intervention. While each community should define its health care priorities, national policy can support this process by establishing uniform standards and protocols for the care of specific disorders based on best-practice guidelines, and by undertaking data collection and information distribution. Capacity and resources may be too limited to permit the complete fulfillment of internationally established practice guidelines; however, the implementation of all feasible component practices is likely to increase the cost-effectiveness of treatment.

Governments should also coordinate care among all tiers of the health care system, recognizing the importance of oversight of primary care centers and their connection to secondary and tertiary care by physicians or specialists at district or national facilities.[11,21,59,76,136] Policy should guide the progress of patients who need advanced care along established pathways that will ensure the earliest appropriate intervention.

Priority setting. To make optimal use of limited health care resources, countries may find it beneficial to enact policies that will guide each community in formulating and updating its health care strategy. To the extent possible, these policies should be based on evidence of cost-effectiveness. Since early detection and treatment of many brain disorders, for example, tends to reduce their severity and prevent recurrence, training guidelines for community health workers should stress the importance of these practices.[61] Likewise, policies that target

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
×

people at high risk for brain disorders are likely to make the most efficient use of limited resources. For example, people who have recently experienced important or catastrophic life events (e.g., childbirth, unemployment, war, natural disaster) would benefit from screening for and prompt treatment of depression.[137,138] Similarly, early detection and control of hypertension and diabetes is key to preventing stroke, as well as other complications.[43] The treatment and, especially, prevention of brain disorders in children should receive particular emphasis, since these are an important means of reducing long-term disability and overall disease burden.[ 139]

Training. Governments should establish standards for the training of health care personnel at all levels to build a strong foundation for a primary care system. National training policies should also reflect the importance of continuing professional education for primary caregivers, as demonstrated in several studies in developing countries.[8,20,65,140] Although such training may be organized by local health services, it could be encouraged through national policies that make available such resources as quality instruction, access to journals, distance learning, lectures, and workshops. Primary care and other staff will need to be released for training courses and given funds for travel and subsistence for the time they are away. They may also be rewarded with small incentive payments to encourage high participation.[92]

Education. National policies supporting school-based efforts to recognize common brain disorders among children would improve their early diagnosis and treatment.

Monitoring of health care delivery and outcomes. The surveillance of brain disorders and their care, including data collected in primary care settings, provides a basis for evaluating the effectiveness of prevention, diagnosis, and treatment practices. National policy should therefore support the collection, analysis, and dissemination of information on health care outcomes.[140]

Local Policy

Rather than simply reacting to health care policy set by the national government, communities are best served when they determine their own priorities. Community involvement in the development of health services tends to promote self-reliance and has been shown to increase demand for health care services.[24] Because district medical officers and their staffs play a vital role in determining local priorities and implementing plans, brain disorders should have a regular place on the agendas of these officials. Some needs may be met through collaborations between health care and other social services and NGOs—for example, through the creation of day care and rehabilitation facilities, crisis centers, and halfway homes. Areas best addressed by community-level policy include the following.

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
×

Education. Community education about the nature of brain disorders can reduce stigmatization and facilitate care. Programs should be adapted to community needs, as determined through empirical methods. Explanations of brain disorders should make use of culturally appropriate idioms and constructs to clearly describe the causes of the disease, means of prevention and treatment, and expected outcomes.

Community education programs should be aimed at abolishing harmful local practices and beliefs, such as the ascription of epilepsy, schizophrenia, and other disorders to supernatural beings or demons, ancestral spirits, sorcery, or witchcraft, as well as the use of dangerous medicinal preparations or ritual treatments.[8,10,11,61,120] In some communities, educators may also need to promote public health care so that more people with neurological and psychiatric disorders will make use of this resource. Policy that guides training for educators may include programs to develop their ability to recognize certain brain disorders in children, such as epilepsy, vision or hearing impairments, and depression.

Access to care. In many communities, especially rural ones, primary care teams require transportation if they are to conduct outreach (to reach many of their clients), as do patients who may need to travel relatively long distances to access both primary and secondary care. Appropriate transportation for health care workers and patients may need to be provided or subsidized by both the community and the health service.

Family care. In the vast majority of cases of psychiatric and neurological disorders in both the developing and developed worlds, the patient's family provides most of the necessary care and in many cases, makes all care decisions on behalf of the patient. Thus, strengthening the ability of families to support people with brain disorders—and when possible, enabling families to play an active role in the control and management of illness—represents a key strategy in reducing the global impact of these diseases. This could be accomplished in part by designing family-based interventions, such as the program for schizophrenia described in Box 3-8.

INTERNATIONAL SUPPORT FOR SYSTEMS OF PRIMARY CARE

The international implications of addressing brain disorders in developing countries are similar to those for a variety of health concerns, many of which are best addressed through the creation of comprehensive community-based health care.[3] Building such capacity in developing countries, as well as attaining the more specific goal of reducing the disease burden due to neurological and psychiatric disorders, will require international contributions of expertise and resources.[91] Two areas in which international support could be especially effective are described below.

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
×
The Role of Professional Societies and International Organizations

The international community of health care professionals can make significant contributions by assisting in the formulation of relevant health care policies that can benefit from their specialized knowledge concerning effective and cost-efficient methods of control, treatment, and rehabilitation of brain disorders. Policy makers are often pessimistic about the likelihood that disorders such as schizophrenia and epilepsy can be treated successfully.[101] They may also assign low priority to rehabilitative efforts for these disorders if they believe

BOX 3-8 Family-Based Intervention for Schizophrenia Patients in China

In 1993, more than 90 percent of the approximately 4.5 million people with schizophrenia in China were estimated to live with their families, and nearly all their outpatient visits included family members. Encouraged by this situation, a team of researchers from Shashi City Veterans Psychiatric Hospital and Harvard Medical School worked intensively with 30 families of schizophrenic patients to test and adapt Western techniques of family-based interventions for use in China.

The researchers quickly discovered that Western approaches to family therapy rely on assumptions that do not hold in China, such as the acceptance of counseling and the goal of encouraging greater independence for individuals with mental disorders. Nevertheless, the team was able, through trial and error, to develop a comprehensive, ongoing program appropriate for the family relationships and social environment of China. The intervention included monthly 45-minute counseling sessions on how to manage social and occupational problems, medication, family education, family group meetings, and crises.

The intervention program was then compared with standard hospital-based treatment for schizophrenia through a series of blind follow-up evaluations after 6, 12, and 18 months. Compared with patients who received standard treatment for schizophrenia, those who participated in the family-based intervention were rehospitalized less often and for shorter periods of time, and they were employed for longer periods. The family-based intervention was also found to be less costly than standard treatment, saving an estimated US $149 per family, equivalent to nearly 1.5 percent of China's expenditure for health care in 1991. Similar programs in Shanghai, Beijing, and Nanjing have been evaluated as effective.

Source: [141]

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
×

patients are not likely to be economically productive. Medical professionals can provide a realistic perspective on these issues.[136]

The medical community can also advocate that brain disorders receive health policy attention commensurate with the contribution of those disorders to the overall burden of disease. This is particularly important where patients are stigmatized. In recent years the World Psychiatric Association, the World Federation of Mental Health, and WHO's Nations for Mental Health of Underserved Populations Action Program (see Box 3-9) have battled against the stigma associated with most psychotic disorders. These efforts could be extended through participation by other professional organizations [87].

Collaborative efforts to control these disorders are most likely to succeed if they involve experts from other than psychiatry and neurology, fields such as public health, obstetrics, pediatrics, and social welfare. One such program, the Out of the Shadows campaign for epilepsy awareness, is led by the International League Against Epilepsy, the International Bureau of Epilepsy, and WHO. Similar efforts for other disorders have been organized by NGOs such as MINDS, the International League of Societies for Persons with Mental Handicap, and the March of Dimes.

BOX 3-9 Nations for Mental Health

Nations for Mental Health is an Action Programme of WHO, developed in collaboration with the Department of Social Medicine of Harvard Medical School. Its main aims are to raise awareness among the people, communities, and governments of the world regarding the effects of mental, neurological, and behavioral problems (e.g., substance abuse) on psychosocial well-being and physical health; promote and support the implementation of mental health policies around the world; and create country-level demonstration projects to serve as models for larger-scale implementation.

Nations for Mental Health is an initiative primarily for underserved populations and therefore includes disadvantaged persons in addition to those suffering from mental disorders. The two groups have much in common, including the need for common solutions that address specific situations. As such, disadvantaged persons and many of those with mental disorders form a broad virtual nation of underserved people dispersed throughout the world.

Nations for Mental Health's intervention model includes the following key elements:

  • Stimulating political awareness, political will, and commitment;

  • Utilizing existing knowledge to create a sound theoretical framework;

  • Developing the necessary human capital;

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
×
  • Supporting local demonstration projects; and

  • Providing financial and human resources.

Direct technical support to countries is provided by WHO. WHO also works collaboratively with partner organizations in the United Nations to maximize the efficient use of technical and financial resources. In addition, WHO provides seed money to initiate demonstration projects and assists country authorities in raising additional support from funding bodies to achieve agreed-upon objectives.

Topical areas for intervention within Nations for Mental Health are listed below. Each involves research, dissemination, education and training, and communication:

  • National plans for mental health;

  • Promotion of mental health and prevention of mental disorders;

  • Improved services and treatments;

  • Human rights and legislation;

  • Empowerment of consumers and families; and

  • Special programs for indigenous populations and refugees.

Nations for Mental Health was conceived as a vehicle for multidisciplinary and interorganizational work. There is close collaboration among WHO Headquarters, regional offices, and country representatives, as well as many other important entities, including the United Nations system; multilateral organizations such as the World Bank; and academic institutions and NGOs, such as Harvard Medical School, the London Institute of Psychiatry, the World Federation for Mental Health, the World Psychiatric Association, the World Association for Psychosocial Rehabilitation, the Red Cross, the Geneva Initiative, and the Carter Center.

Source: [142]

WHO has championed many activities designed to improve the services available for people with brain disorders. WHO’s primary care protocols could be adapted and applied in more communities. Similarly, UNICEF and the United Nations Development Program (UNDP) have supported the Expanded Program on Immunization and the supplying of essential vaccines to developing countries, as well as research and development programs aimed at combating tropical diseases. Both organizations could also take an active role in dealing with vaccine-preventable diseases that cause developmental disabilities.

By supporting the Global Burden of Disease Study, the World Bank fostered new insights into the worldwide social and economic impacts of neurological and psychiatric disorders. The World Bank and other development banks

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
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could advance this frontier by supporting efforts to better estimate the disease burden in different cultures, and by contributing to the building of infrastructure needed to reduce the burden of brain disorders in developing countries.

Provision of Essential Drugs

The efforts of donors and NGOs are needed to improve the availability of essential medications for neurological and psychiatric disorders in developing countries.[61] The WHO (1998) List of Essential Drugs contains 302 products “that satisfy the health care needs of the majority of the population and should therefore be available at all times in adequate amounts and in appropriate dosage forms.” Yet one-third of the world's population, most of whom live in developing countries, does not have access to these drugs.[23,96]

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 developing countries' purchasing and distribution systems.[143] Every country needs to have in place an effective screening/approval mechanism for new drugs, a cost-effective purchasing mechanism, an efficient distribution system, and local health care providers capable of getting drugs to the people who need them. To this end, model programs and international purchasing co-operatives should be encouraged.[ 143,144]

Because of patent protections, several highly effective medications for disorders such as depression, schizophrenia, and epilepsy are priced beyond the reach of most people in developing countries. In Nigeria, for example, a public worker's minimum monthly wage will purchase only a 10-day supply of the antipsychotic drug risperidone.[ 145] Scarcity of foreign exchange and general budgetary restrictions prevent developing countries from purchasing adequate quantities of these drugs. Innovative procurement and partnership strategies designed to ease these problems for certain drugs for which there is no alternative treatment have been developed in cooperation with a number of manufacturers and are currently being tested (see Table 3.1). Others have proposed that developing countries, or an international agency purchasing on their behalf, guarantee the purchase of a certain quantity of a drug at a high price in exchange for giving low-income countries the option of purchasing additional quantities at a substantial discount.

Partnerships with the private sector, particularly pharmaceutical and medical device companies, could further support and sustain programs in developing countries. As socioeconomic development gradually progresses in developing countries, it is likely that the pharmaceutical and medical devices industry will increasingly influence the nature and adequacy of care among these populations. Efforts to initiate constructive working relationships may help promote a sense of responsibility within private industry and secure strong commitments into the future.

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
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TABLE 3-1 Philanthropic drug donation program

Drug Company

Drug and target disease(s)

Public health goal

Program manager

Major partnersA

Merck

Mectizan: Onchocerciasis Lymphatic filariasisB

Elimination of onchocerciasis (and lymphatic filariasis in Africa)

Mectizan Donation Program, in the Task Force for Child Survival and Development (Carter Center)

Merck

Carter Center

WHO, Africa Programme for Onchocerciasis Control

Pfizer

Zithromax: Trachoma

Elimination of blinding trachoma

International Trachoma Initiative

Pfizer

Edna McConnell Clark Foundation

WHO

SmithKline Beecham

Albendazole: Lymphatic filariasis

Elimination of lymphatic filariasis

WHO

SmithKline Beecham

WHO

GlaxoWellcome

Malarone: Malaria

Control of drug-resistant malaria

Task Force for Child Survival and Development (Carter Center)

GlaxoWellcome

Carter Center

Task Force for Child Survival and Development

WHO-Roll Back Malaria

Source: [146]

A In each case, many more partners are involved than are shown on these illustrative lists.

B An additional commitment by Merck, Source: ref. 5.

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
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NATIONAL CENTERS FOR TRAINING AND RESEARCH

Many organizations make important individual contributions to strengthening health care in developing countries. However, a coordinated effort is needed to support comprehensive health care systems that address brain disorders.

Centers for such coordinated efforts have been established in a limited number of developing countries.9 Evidence for the successful development of research and intervention programs resulting from these initiatives indicates that similar centers could be adapted by other countries consistent with their national priorities and resources. The development of similar national centers for training and research is proposed for the provision of a range of services for brain disorders currently under way at existing centers:

  • Organization of protocols and procedures for the care of brain disorders in primary, secondary, and tertiary care;

  • Initial and continuing training of instructors, who in turn train community health care workers in basic care for brain disorders;

  • Operational research to evaluate the effectiveness of treatments and delivery systems;

  • Surveillance and monitoring of brain disorders and their risk factors;

  • Data collection and analysis to support health planning and policy development at the community, primary care, specialist, and national levels; and

  • Demonstration projects for evaluating the quality of care provided for brain disorders and its cost-effectiveness in various settings.

By serving as resources for knowledge regarding effective prevention and intervention strategies, training programs, and research findings, and by disseminating this information locally, nationally, and internationally, national centers would facilitate the exchange of information among medical professionals and policy makers. This process could be further advanced by collaboration between centers in developing countries and their counterparts in developed countries. The focus of the centers would be on the adaptation of effective programs and procedures to national and local settings.

A particularly promising paradigm for research conducted at such centers, known as health systems research (HSR), emphasizes the solving of problems that weaken locally available health care resources— technical, human, and fi-

9  

These centers include the National Institute of Mental Health and Neurosciences Department of Psychiatry, Bangalore, India; WHO Collaborating Centre for Mental Health Teheran Institute of Psychiatry, Islamic Republic of Iran; Institute of Mental Health, Beijing Medical College, People's Republic of China; Institute of Psychiatry, Ain Shams University, Cairo, Egypt; WHO Collaborating Centre for Research and Training in Mental Health, Rawalpindi, Pakistan; Program of the Ministry of Health of Mozambique, Africa; WHO Collaborating Centre for Research and Training in Mental Health, Porto Alegre, Brazil; and Center for Mental Health, Ministry of Health and Social Welfare, Mongolia.

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
×

nancial. The methodologies of HSR are influenced by existing medical knowledge as well as sociocultural factors and represent an attempt to facilitate communication between health care providers and patients.[ 93] Thus, one tenet of HSR is the need to understand patient-explanatory models, since simple agreement on a diagnostic label for a patient 's condition may be no guarantee of agreement on the condition's etiology or treatment; on the contrary, it may give a false impression of consensus.[93] HSR also emphasizes implementing research programs in representative settings as well as focusing on mitigating the social risk factors for disease, such as poverty. By stressing the use of HSR in the study of neurological and psychiatric disorders in particular, centers for training and research could not only foster greater awareness and provision of services for brain disorders in developing countries, but also lead to the evolution of strategies with international relevance.

A crucial step toward developing a worldwide network of national centers for training and research is to secure initial funding. Given their broad role, these centers should attract funding from a wide variety of sources, including international donor agencies, foundations, NGOs, development banks, industry, and health care advocacy groups. Two initiatives established by WHO in 1997—the Action Program on Mental Health for Underserved Populations [93] and the Global Initiative on Neurology and Public Health [3]—could be key resources. It will be important to ensure, however, that funding for the centers is not diverted from funding for local health services. Strengthening local health care capacity and quality is the fundamental goal. With the commitment of the best specialists, these centers could advance the effort to reduce the total burden of disease in the developing world by championing cost-effective treatment and prevention of long-neglected brain disorders.

CONCLUSION

Integrating care for neurological, psychiatric, and developmental disorders into primary care-based health systems stands as the central challenge in reducing the impact of these disorders in developing countries. Given the existing constraints on resources, building comprehensive health care systems capable of addressing increasingly prevalent brain disorders must proceed gradually in most settings. However, intermediate steps toward this goal appear likely to provide rewards that can encourage further progress. Several programs in developing countries have achieved a successful, if limited, integration of neurological or psychiatric care into primary care services. The successes and limitations of these programs suggest what needs to be done in the future.

International collaborations and partnerships can play an important role by increasing the capacity of developing countries for delivery of neurological and psychiatric care as well as for locally relevant research on brain disorders. Local evaluations of priorities and resources can best guide communities and countries

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
×

in their choices of appropriate interventions, local staffing, and oversight. Effective primary care programs will require strong support and periodic and continued supervision from providers of secondary and tertiary care, particularly where resources are limited. The balance between primary and higher care levels should be determined by rigorous programmatic evaluation on the basis of cost-effectiveness.

It is crucial that such programs—and indeed all future efforts to reduce the impact of brain disorders —include the capacity for rigorous evaluation. Providing optimal care for these often complex and difficult disorders will necessarily involve an iterative process of testing a program, evaluating it, and redesigning it for improvement. There is no endpoint in this process: demand, delivery, and innovation must be constantly monitored and incorporated to provide the best possible health care to the greatest number of people.

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Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
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Strategies For Addressing Brain Disorders

To reduce the disease burden now:

  • 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.

  • 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.

  • 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.

To create options for the future:

  • 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.

  • 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.

  • 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.

Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
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Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
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Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
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Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
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Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
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Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
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Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
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Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
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Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
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Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
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Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
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Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
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Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
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Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
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Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
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Suggested Citation:"3 Integrating Care of Brain Disorders into Health Care Systems." Institute of Medicine. 2001. Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10111.
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Brain disorders—neurological, psychiatric, and developmental—now affect at least 250 million people in the developing world, and this number is expected to rise as life expectancy increases. Yet public and private health systems in developing countries have paid relatively little attention to brain disorders. The negative attitudes, prejudice, and stigma that often surround many of these disorders have contributed to this neglect.

Lacking proper diagnosis and treatment, millions of individual lives are lost to disability and death. Such conditions exact both personal and economic costs on families, communities, and nations. The report describes the causes and risk factors associated with brain disorders. It focuses on six representative brain disorders that are prevalent in developing countries: developmental disabilities, epilepsy, schizophrenia, bipolar disorder, depression, and stroke.

The report makes detailed recommendations of ways to reduce the toll exacted by these six disorders. In broader strokes, the report also proposes six major strategies toward reducing the overall burden of brain disorders in the developing world.

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