Follow-up of children with hemoglobinopathies diagnosed by the Brazilian Neonatal Screening Program in the State of Pernambuco

Abstract

ObjectiveTo determine the geographical distribution of hemoglobinopathies in the State of Pernambuco, to characterize the children with these diseases and to describe factors associated with their follow-up at the referral center during the period from 2003 to 2010.MethodsA retrospective, cross-sectional, descriptive study was carried out of 275 medical records from a total of 302 children with hemoglobinopathies diagnosed by the National Neonatal Screening Program in the State of Pernambuco in the study period. Microsoft Excel was used for data processing and analysis. The chi-square and the Fisher test were used for statistical analysis. The level of significance was set at 5%. Terra View software was used to analyze the geographical distribution of hemoglobinopathies in the State.ResultsA total of 8.9% of the cases of hemoglobinopathies detected in the period were not followed up at the referral center. For the mothers of children with diseases, this was their second or third or more pregnancy in 64.2% and 30.2%, respectively. Regarding the influence of region of residence and regular medical appointments, the study demonstrated that children from the Zona da Mata, Sertão and Vale do São Francisco regions did not attend 45.2%, 50% and 55.6% of their appointments in the outpatient department, respectively.ConclusionsThis study shows that a significant number of children do not begin consultations in the outpatient clinic and even those who started treatment early and who have the most severe form of the disease, usually miss medical appointments.

National neonatal screening program for hemoglobinopathies: how far have we advanced?

“…The data reported by Soares et al, 14 together with those from previous studies, 19 , 20 , 21 as well as the indicators recorded in the NNSP management system, can help to define new care strategies for Brazilian children with hemoglobinopathies. The training and certification of pediatricians of government health clinics to treat these patients in their residential areas, greater integration of the Family Health Program with the NNSP, investment in infrastructure to allow greater local independence, and a greater involvement of professional societies 3 all need to be discussed.…”

“…The training and certification of pediatricians of government health clinics to treat these patients in their residential areas, greater integration of the Family Health Program with the NNSP, investment in infrastructure to allow greater local independence, and a greater involvement of professional societies 3 all need to be discussed. Some of the data presented by Soares et al, 14 such as absence of family planning and indifference to early care for a second affected child, reinforce the importance of investment in information sources for families.…”

“…Soares et al 14 and other researchers, 15 , 16 , 17 on reporting their data, demonstrate the challenges faced by a neonatal screening program in a country of continental dimensions, especially in regions and populations with social and economic problems. Pechansky and Thomas in 1981 18 developed parameters for access to medical care, and some of these were later analyzed by Botler 3 in relation to neonatal screening programs.…”

“…Pechansky and Thomas in 1981 18 developed parameters for access to medical care, and some of these were later analyzed by Botler 3 in relation to neonatal screening programs. The data from Soares et al 14 highlight one of these: accessibility, defined as the relationship between the location of the service and the location of the users, taking into account the resources necessary to permit the user to avail from the services.…”

Habilidades do desenvolvimento infantil em crianças com Doença Falciforme: enfoque na linguagem

“…A dificuldade de acesso ao tratamento pode gerar descontinuidade do cuidado, perda de vínculo com o profissional da saúde, baixa satisfação das pessoas com a doença e assim, consequências desfavoráveis ao tratamento (BRASIL, 2009). O estudo brasileiro de Soares et al (2014) verificou que as crianças e familiares com Doença Falciforme geralmente não comparecem aos agendamentos médicos. Boulet et al (2010) investigaram as barreiras encontradas para os cuidados à saúde,…”