Abstract：
OBJECTIVE:To characterize the deaths of 193 children with sickle cell disease screened by a neonatal program from 1998 to 2012 and contrast the initial years with the final years. METHODS:Deaths were identified by active surveillance of children absent to scheduled appointments in Blood Bank Clinical Centers (Hemominas). Clinical and epidemiological data came from death certificates, neonatal screening database, medical records, and family interviews. RESULTS:Between 1998 and 2012, 3,617,919 children were screened and 2,591 had sickle cell disease (1:1,400). There were 193 deaths (7.4%): 153 with SS/Sβ(0)-thalassemia, 34 SC and 6 Sβ(+)thalassemia; 76.7% were younger than five years; 78% died in the hospital and 21% at home or in transit. The main causes of death were infection (45%), indeterminate (28%), and acute splenic sequestration (14%). In 46% of death certificates, the term "sickle cell" was not recorded. Seven-year death rate for children born between 1998 and 2005 was 5.43% versus 5.12% for those born between 2005 and 2012 (p = 0.72). Medical care was provided to 75% of children; 24% were unassisted. Medical care was provided within 6 hours of symptom onset in only half of the interviewed cases. In 40.5% of cases, death occurred within the first 24 hours. Low family income was recorded in 90% of cases, and illiteracy in 5%. CONCLUSIONS:Although comprehensive and effective, neonatal screening for sickle cell disease was not sufficient to significantly reduce mortality in a newborn screening program. Economic and social development and increase of the knowledge on sickle cell disease among health professionals and family are needed to overcome excessive mortality.
journal_name
J Pediatr (Rio J)journal_title
Jornal de pediatriaauthors
Sabarense AP,Lima GO,Silva LM,Viana MBdoi
10.1016/j.jped.2014.08.006subject
Has Abstractpub_date
2015-05-01 00:00:00pages
242-7issue
3eissn
0021-7557issn
1678-4782pii
S0021-7557(14)00153-3journal_volume
91pub_type
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journal_title：Jornal de pediatria
pub_type： 杂志文章
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更新日期：2014-07-01 00:00:00
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journal_title：Jornal de pediatria
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doi：10.2223/JPED.1626
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journal_title：Jornal de pediatria
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doi：10.1016/j.jped.2017.03.006
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journal_title：Jornal de pediatria
pub_type： 杂志文章
doi：10.1016/j.jped.2017.03.011
更新日期：2018-01-01 00:00:00
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doi：10.2223/jped.150
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pub_type： 杂志文章,评审
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doi：10.2223/jped.360
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journal_title：Jornal de pediatria
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doi：10.2223/JPED.1966
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更新日期：2001-09-01 00:00:00
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更新日期：2016-07-01 00:00:00
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更新日期：2014-07-01 00:00:00
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更新日期：1996-11-01 00:00:00
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更新日期：2020-10-18 00:00:00
