Estimated costs for Duchenne muscular dystrophy care in Brazil.

BACKGROUND: The economic burden of rare diseases on health systems is still not widely measured, with the generation of accurate information about the costs with medical care for subjects with rare diseases being crucial when defining health policies. Duchenne Muscular Dystrophy (DMD) is the most common form of muscular dystrophy, with new technologies recently being studied for its management. Information about the costs related to the disease in Latin America is scarce, and the objective of this study is to evaluate the annual hospital, home care and transportation costs per patient with DMD treatment in Brazil. RESULTS: Data from 27 patients were included, the median annual cost per patient was R$ 17,121 (IQR R$ 6,786; 25,621). Home care expenditures accounted for 92% of the total costs, followed by hospital costs (6%) and transportation costs (2%). Medications and loss of family, and patient's productivity are among the most representative consumption items. When disease worsening due to loss of the ability to walk was incorporated to the analysis, it was shown that wheelchair users account for an incremental cost of 23% compared with non-wheelchair users. CONCLUSIONS: This is an original study in Latin America to measure DMD costs using the micro-costing technique. Generating accurate information about costs is crucial to provide health managers with information that could help establish more sustainable policies when deciding upon rare diseases in emerging countries.

Tools for evaluating environmental performance at Brazilian public ports: Analysis and proposal.

The port sector critically needs improved management techniques to evaluate its environmental performance. In the present study, we conducted an exploratory research to understand the metrics used in the Brazilian public ports to assess their environmental performance. We considered two state agencies and two port authorities of southern Brazil. As preliminary results, we found that economic factors are excluded in the tools for measuring environmental performance. A system of indicators to address this shortcoming was then proposed, but it could not be applied because of data deficiencies. Thus, the system was divided into two parts: a simplified system with 7 indicators (measuring costs related to criteria were measured only technically) and an advanced system with 5 indicators (approaching costs were currently difficult to measure). Thus, the proposed indicators can be applied by port authorities to facilitate decision-making related to environmental management. As suggestions for further work, we propose research that includes more ports, both public and private, to provide an overview at the national level.