10.6084/m9.figshare.11609226.v1 Taciana Marques Taciana Marques Suely Arruda Vidal Suely Arruda Vidal Adriana Farrant Braz Adriana Farrant Braz Maria de Lourdes Holanda Teixeira Maria de Lourdes Holanda Teixeira Clinical and care profiles of children and adolescents with Sickle Cell Disease in the Brazilian Northeast region SciELO journals 2020 Sickle cell disease Complications Epidemiology Child health Adolescent health Neonatal screening 2020-01-15 04:37:52 Dataset https://scielo.figshare.com/articles/dataset/Clinical_and_care_profiles_of_children_and_adolescents_with_Sickle_Cell_Disease_in_the_Brazilian_Northeast_region/11609226 <div><p>Abstract Objectives: to describe the clinical epidemiological and care profiles of pediatric patients with sickle cell disease. Methods: a descriptive study of all (48) children and adolescents with sickle cell disease, assisted at a public referral hospital in Paraíba State. The information were obtained from the patients’ medical records and interviews were analyzed by using the Epi-Info program 7.2 version, frequency tables were built for the categorical variables and the central measurements and dispersion tendencies were calculated for the variables related to age and hospitalizations. Results: the patients’ age ranged from 15 months to 19 years old (median 8.6 years old); 91.7% considered their skin color mixed/black; 81.3% belong to D and E social class; 48% of the responsible guardians reported to have less than nine years of schooling; 70.9% lived in other cities; 93.8% received late diagnosis and 87.5% had irregular outpatient follow-up, 62,5% had an incomplete or outdated vaccination record. There were 226 hospitalizations; painful crises were the most common causes (55.7%). Each patient was hospitalized, about 5.2 times in the period; the median of total days for being hospitalized was 28. There were no deaths. Cardiac (56.2%) and hepatobiliary (54.3%) were the most common chronic compli-cations. Conclusions: sickle cell disease is a neglected clinical condition in the Brazilian Northeast region, where the appropriate political support for the patients is not fulfilled.</p></div>