Aspectos epidemiológicos e sociais da doença falciforme Epidemiologic and social aspects of sickle cell disease

A doença falciforme (DF) é uma doença genética frequente. Predomina entre negros e pardos e, no Brasil, a cada ano, nascem 3.500 crianças com DF e 200.000 com traço falciforme. As hemácias com hemoglobina S assumem, em condições de hipóxia, forma semelhante à foice, podendo levar à oclusão dos capilares, provocando lesões teciduais agudas e crônicas de órgãos, quase sempre acompanhadas de dor. Através de visitas domiciliares objetivou-se ampliar o conhecimento dos aspectos epidemiológicos e de enfrentamento da doença. Foram estudados 47 pacientes falcêmicos da cidade de Uberaba (MG), com idade igual ou superior a 18 anos, sendo 78,7% negros, 17% pardos e 4,3% brancos, preponderando o gênero feminino (59,6%). Quanto ao tipo de hemoglobinopatia, 63,8% eram SS, 17% SC e 10,6% β-talassemia. A maioria (74,5%) residia em bairros periféricos; 42,5% tinham o segundo grau completo; 38,2% eram aposentados ou não tinham profissão definida. A renda per capita de 48,9% era de até um salário mínimo e 19,1% não percebiam qualquer rendimento. Quanto aos sentimentos relacionados à doença, 38,3% referiram aceitação, 21,3% revolta, 17% tristeza; 46,8% relatavam, após o diagnóstico, mudança para pior em relação ao trabalho e 31,9% em relação ao lazer. Verificou-se neste estudo que a DF reflete negativamente nas atividades laborais e na qualidade de vida do paciente. Contudo, as dificuldades no enfrentamento da doença, habitação precária, desemprego e/ou trabalho mal remunerado poderiam ser minimizadas com acompanhamento social e psicoterápico adequados, que deveriam ser disponibilizados a todo doente falciforme.Sickle cell disease (SCD) is the commonest genetic illness of human beings. In Brazil it is predominant among black and dark-skinned people; every year 3,500 children are born with SCD and 200,000 with the sickle cell trait. In conditions of hypoxia, red blood cells assume the shape of a sickle. Patients may evolve with capillary occlusion causing acute and chronic tissue lesions in organs, which is almost always accompanied by pain. With the purpose of improving knowledge related to the epidemiologic aspects of the illness and how patients cope with it, 47 over 18-year-old patients from the city of Uberaba were studied during home visits. Of these predominantly female patients (59.6%), 78.7% were black, 17% dark-skinned and 4.3% white. In respect to the type of hemoglobinopathy, 63.8% had hemoglobin SS; 17% had hemoglobin SC and 10.6% had sickle beta-thalassemia. The majority (74.5%) lived in poor regions of the city, 42.5% had concluded high school, 38.2% were either retired or did not have any specific profession, 48.9% earned up to one minimum wage and 19.1% did not receive any wages. In respect to their feelings, 38.3% showed they accepted their illness, 21.3% were resentful, 17% were sad and 46.8% said their lives had changed for the worse in relation to work and 31.9% in relation to leisure. It was possible to show with this study that SCD negatively reflects on activities related to work and on the patient's quality of life. Thus, difficulties in coping with the illness, such as poor housing, unemployment and/or badly paid jobs, may be minimized with social and psychotherapeutic accompaniment, which should be made available to every SCD patient

Pain measurement as part of primary healthcare of adult patients with sickle cell disease

OBJECTIVE: The aim of this exploratory, cross-sectional study was to evaluate pain in sickle cell disease patients and aspects related to primary healthcare. METHODS: Data were obtained through home interviews. The assessment instruments (body diagram, Numerical Pain Scale, McGill Pain Questionnaire) collected information on the underlying disease and on pain. Data were analyzed using the Statistical Package for Social Sciences program for Windows. Associations between the subgroups of sickle cell disease patients (hemoglobin SS, hemoglobin SC, sickle &#946;-thalassemia and others) and pain were analyzed using contingency tables and non-parametric tests of association (classic chi-square, Fisher's and Kruskal-Wallis) with a level of 5% (p-value < 0.05) being set for the rejection of the null hypothesis. RESULTS: Forty-seven over 18-year-old patients with sickle cell disease were evaluated. Most were black (78.7%) and female (59.6%) and the mean age was 30.1 years. The average number of bouts of pain annually was 7.02; pain was predominantly reported by individuals with sickle cell anemia (hemoglobin SS). The intensity of pain (Numeric Pain Scale) was 5.5 and the quantitative index (McGill) was 35.9. This study also shows that patients presented a high frequency of moderately painful crises in their own homes. CONCLUSION: According to these facts, it is essential that pain related to sickle cell disease is properly identified, quantified, characterized and treated at the three levels of healthcare. In primary healthcare, accurate measurement of pain combined with better care may decrease acute painful episodes and consequently minimize tissue damage, thus improving the patient's overall health