According to the World Health Organization, disorders of the nervous system—mental, neurological, and substance use disorders—produce substantial disease burden in the developing world. The longstanding focus on infectious disease has obscured their high prevalence and toll on societies, but these disorders, in aggregate, are significant causes of disability in adults and impede human capital formation by their effects on children. Caring for these patients poses a formidable challenge for individuals, families, governments, and societies around the world. Given the existence of cost-effective treatments for many of these disorders, improving both access to care and quality of care could go far to alleviate disease burden. However, resource constraints, disorder stigmatization, shortages of trained personnel, and a lack of understanding of the causes of the disorders limit the amount and quality of care that many individuals receive.

Despite the high prevalence and disease burden of these disorders, most countries in sub-Saharan Africa have less than one psychiatrist per million people. The situation is also grim for psychiatric nurses, psychologists, and trained social workers. The total number of neurologists in the region may be even smaller. The formularies are extremely limited, often containing only older medications with a high side-effect burden; even for these drugs, supply chains often break down, making patient adherence to often complicated medication regimens nearly impossible. These and other deficits in treatment systems result not only in needless suffering, but also in chronic disability for patients and limitations on the ability of caregivers to function outside the home. At a national level, these consequences seriously interfere with economic development.

Despite research showing the disability and premature mortality resulting from disorders of the nervous system, systematic epidemiological data are lacking in most countries of sub-Saharan Africa. Most experts agree that the scope of unrecognized illness is far greater than the documented cases, and data on children and elderly are particularly sparse. Researchers face further challenges because often patients are hidden from the community out of fear, which makes obtaining accurate data difficult. Without more complete information about the scope of the problem, the countries’ leaders are not addressing the needs of persons with these disorders. The needs include improved access to training for healthcare providers and access to better equipment, more personnel, appropriate medicines, and other needed resources. Improved quality of care for individuals suffering from mental, neurological, and substance use disorders must be a high priority for governments and societies so appropriate investments are made to provide proper care and treatment for these individuals.

Addressing the need to advance these important discussions, the U.S. Institute of Medicine’s Forum on Neuroscience and Nervous System Disorders, in collaboration with the Forum on Health and Nutrition of the Uganda National Academy of Sciences, convened an international workshop on quality of care issues for nervous system disorders in sub-Saharan Africa on August 4 and 5, 2009, in Kampala, Uganda. Recognizing both the importance of providing high-quality care for disorders of the nervous system and the resource limitations of most sub-Saharan African countries in diagnosing and treating these disorders, the workshop participants explored strategies to improve care for the countless individuals suffering from nervous system disorders. Other aims of the workshop were to discuss opportunities that can be used to improve continuity of care and sustainability within a country’s healthcare system, and to identify resources that are currently available or could be made available to aid in implementation of treatments and prevention projects.

Many key stakeholders attended, including more than 30 speakers, 120 audience members, and representatives from 16 countries. Stakeholders included government policy makers from African countries and the World Health Organization, clinicians, researchers, individuals representing non-governmental organizations, and patient advocates.

The workshop represented a true collaboration between the U.S. Institute of Medicine of the National Academies and the Uganda National Academy of Sciences. Staff from each organization worked closely with an extremely dedicated planning committee that brought together an international cohort with expertise in neuroscience, ethics, pediatrics, drug abuse, international public health, mental health, and neurological disorders. Important and energetic discussions followed well into the evening reception hour, which reinforced a goal of the meeting—to facilitate networking and open discussion between various stakeholders.

Some of the major areas of emphasis and recurring themes that were discussed and presented at the workshop include

  • exploring the need to consider all disorders of the nervous system, including addictive disorders;
  • sharing the benefit of leveraging skills, expertise, and networks of other health fields (e.g., HIV/AIDS, malaria);
  • maintaining a focus on treatment and prevention;
  • improving the available medication formulary for nervous system disorders;
  • supporting demonstration projects examining
    • mechanisms to improve availability of medications and care in rural settings and the
    • role of information technology in improving awareness, training, and treatment, especially in rural settings;
  • expanding the use of high-quality, community-based care, and the training of community health workers;
  • collecting further data on effectiveness; and
  • supporting the need for champions who will relay these, and future, needs and concerns to resource providers.

The areas of emphasis suggest the need for more action and investment by all stakeholders, national and international. Real progress in the region will depend on forging partnerships that draw on a broad range of resources and skill sets. Most important is a commitment from stakeholders to make changes and improvements to the current system. The workshop demonstrated that there is great enthusiasm and desire to improve what is currently in place, but partners are needed. This workshop presented a timely and unique opportunity to capitalize on the rich ideas, networks, and momentum that came from participants. Clearly there is a need to improve care for individuals with mental, neurological, and substance use disorders in sub-Saharan Africa, and we hope that this workshop and summary will help lay the foundation for continued progress.

Steven E. Hyman, Co-chair

Edward K. Kirumira, Co-chair