Implantação da triagem neonatal, evolução da mortalidade na infância e indicadores de desempenho do programa: um estudo ecológico

Abstract

INTRODUCTION: The Newborn Screening Program (NSP) is a relevant strategy for preventing newborn death and postnatal complications such as neurological damage. In Federal District (FD) it has begun in 1993 and was expanded in 2012, an unprecedented public health act in Unified Healthcare System – SUS. OBJECTIVE: Analyze the Infant Mortality Rate (IMR), the 1 to 5 years Mortality Rate (5MR), the FD expanded screening program related diseases Mortality Rate and the program’s performance indicators and compare them to Brazilian’s rates. METHOD: An ecological, temporal analysis was performed with the IMR, the 5MR, the FD expanded screening program related diseases Mortality Rate from 2004 to 2020 and with the program’s performance indicators from 2004 to 2021. All of them were contrasted to Brazilian’s rates. The 2012 NSP expansion divided the analysis in two periods, pre and post expansion. Data was from the Ministry of Health Mortality Information System, the Federal District Newborn Screening Reference Service Database, and the Ministry of Health National Newborn Screening Program. The annual percentage change (APC) was calculated, then Prais-Winsten regression estimated, and the Durbin-Watson test checked the results. RESULTS: From 2004 to 2020 the TMI decreased significantly in the FD (APC: -4,70, CI95%: -6,47 to -2,90) as it was in Brazil (APC: -5,81, CI95%: -7,02 to -4,58). From 2004 to 2011, before the expansion, the decrease wasn´t significant (APC: -5,28, CI95% -11,07 to 0,89) but it was from 2012 to 2020 (APC: -8,31, CI95%: -11,42 to -5,10), when expended NSP begun. The Brazilian 5MR decreased significantly (APC: -4,59 (IC95%: -6,26 to -2,88) from 2004 to 2020 as it was in FD 5MR (APC: -7,17 (CI95%: -8,58 to -5,75) who presented statistical relevance before APC -8,05 (CI95%-13,94 to -1,75) and after APC -4,16 (CI95%-8,06 to -0,10) the NSP expansion. There wasn’t reduction in FD expanded screening program related diseases Mortality Rate. From 2004 to 2021 727,459 children were screened in FD and 333.408 from 2014 to 2021, 0,88% of them with inferior sample quality. Since 2012 most of the samples (95%) were collected before discharge. From 2014 to 2019 there were loss of follow up in 5,8% of the suspicious newborns and from 2014 to 2020 0,25% of them had fatal outcomes, mainly related to prematurity. The FD presented an increasing trend on coverage (APC 3,70 CI95% 1,35 to 6,11) and age at time of initial screening (APC 16,81 CI95% 7,73 to 26,66), while Brazil remained steady in both APC 0,55 (CI95% -0,40 to 1,51) e APC 2,70 (CI95% -0,06 to 5,53). In FD the sample transport time had a decreasing trend (APC -15,91 CI95% -27,46 to -2,52) but sample processing time APC -12,58 (CI95% -27,0 to 4,78) and recall time APC 7,83 (CI95% -11,81 to 31,84) indicators remained steady. In Brazil, all of them had an increasing trend but they should decrease in time. The congenital hypothyroidism initial visit age had a steady trend to both FD (APC -6,94 (CI95% -17,14 to 4,51 and Brazil APC -4,16 (IC95% -8,20 a +0,05) and it was decreased for phenylketonuria in both: APC FD -8,50 (CI95% -14,75 to -1,80), APC Brazil -5,43 (CI95% -9,84 to -0,81). The recall rate was 9,18% and the Positive Predictive Value was from 0,31% to 85,21% according to the disease screened. CONCLUSION: An ecological study cannot evidence the apparent correlation in TMI reduction and 2012 newborn screening program expansion, but it must be considered. The indicators analysis pointed to a statistically significant growth trend related to the sample collect as they were impacted to the NSP expansion. Brazil’s indicators had no improvement since 2004. This unprecedented FD newborn screening analysis can subsidize the death register and the program planning and improvement actions as it underlines the weaknesses.