As causas da deficiencia fisica em municipios do nordeste brasileiro e estimativa de custos de servicos especializados / The causes of physical disability in municipalities of the northeast of Brazil and an estimate of costs of specialized services

As populações do nordeste brasileiro possuem elevadas taxas de endogamia e deficiências. Neste trabalho, foi realizado um estudo epidemiológico transversal com método do informante para descrever doenças genéticas e as adquiridas que causam deficiências físicas em oito municípios da Paraíba e estimar os custos por serviços especializados de fisioterapia e aquisição de equipamentos de tecnologia assistiva. De uma população de 48.499 habitantes, 338 pessoas foram triadas e 123 (0,34%) realizaram avaliação clínico-genética e funcional por uma equipe multidisciplinar de especialistas. Fatores genéticos foram responsáveis por 58,5% das deficiências, sendo encontrados alguns agrupamentos de afecções prevalentes nas populações amostradas: amiotrofia espinal progressiva, ataxia espinocerebelar, distrofia muscular e síndrome Spoan. A descrição do perfil socioeconômico e das demandas por serviços de reabilitação e tecnologia assistiva apontam para necessidade de estabelecimento de políticas públicas específicas para essas comunidades.

The population of the northeast of Brazil is characterized by high rates of endogamy and disabilities. An epidemiological cross-sectional study using the informant method was conducted in eight communities in the hinterlands of Paraiba to describe genetic and acquired diseases that cause disabilities and to estimate the costs of specialized services such as physiotherapy and the acquisition of technological assistential equipment. From a population of 48,499 inhabitants, 338 individuals were screened and 123 (0.34%) were clinically, genetically and functionally assessed by a multidisciplinary team of specialists. Genetic factors were responsible for 58.5% of the disabilities, with some clusters of prevalent diseases being found within the sampled communities, namely progressive spinal muscular atrophy, spinocerebellar ataxia, muscular dystrophy and Spoan syndrome. The socioeconomic profile and the demand for rehabilitation services and technological assistance highlight the need to introduce and implement specific public health policies in these communities.

Problems and coping strategies of families having patients with and without deformities.

Deformity in leprosy is a major problem causing serious socio-economic and psychological consequences to the patients and their families, as well as for the programmers. This paper examines the nature and extent of social and economic problems of leprosy-affected families having patients with and without deformities and their strategy to cope with those problems. The data were collected from 500 sampled families in two monotherapy districts in Tamilnadu in 1989-1990. About 20% of the families reported facing socioeconomic problems. The proportion of families having patients with deformities facing problems was ten times higher (57.3%) than those having patients with no deformities (5.7%). Majority of the problems of the affected families were economic. The major strategy adopted to deal with economic problems was to adjust within the earnings of other family members to make up the loss or reduction in income from the patient. The major social problem faced was denial of participation in the community. While families with deformed patients adopted "acceptance of their existing situation," families with non-deformed patients adopted "avoidance" as their coping strategy. Appropriate rehabilitation programmes to restore economic security to the patients and their families is called for. There is also the need to educate the community about the disease in order to dispel the myths and fears associated with leprosy.