Early access to biological neonatal screening: coordination among child care action programs.

Abstract Objective: To verify factors associated with early newborn access to biological neonatal screening. Method: A cross-sectional quantitative study was carried out with all newborns who underwent tests in healthcare units, hospitals, and laboratories of a city in the state of São Paulo, Brazil, with programs linking healthcare information. The following variables were investigated: child’s age at collection (dependent); place of collection; date of collection; and type of user (independent). Descriptive and inferential statistics were applied. Results: Records of 15,652 screenings were found in the two years analyzed. In the first year analyzed, 7,955 births and 7,640 (96.0%) tests were recorded, of which 5,586 (73.1%) were undertaken with newborns between three and five days old. In the next year analyzed, 8,316 births and 8,012 (96.3%) screenings were recorded, of which 7,025 (87.6%) were undertaken with newborns in the same age group. A statistically significant association was found between the variables “child’s age” and “type of user” in one year, and between the variables “child’s age” and “place of collection” in both years. Conclusion: Early access to these tests enables the screening of diseases and referral for treatment. The present study contributes to the management of child care programs by presenting strategies linking data and actions to improve access to biological neonatal screening.


Introduction
The objective of comprehensive child health care is to promote quality of life and reduce child mortality.
As a way to operationalize this care, the National Policy for Comprehensive Child Health Care (PNAISC, its acronym in Portuguese), in its strategic areas, directs and organizes this care by means of definition of priority actions for child health care, such as addressing perinatal issues, which are the main causes of infant mortality (1) .
Prior to the PNAISC, more than a decade ago, the Commitment Agenda for Comprehensive Child Health Care and Infant Mortality Reduction introduced comprehensive care lines in order to provide care continuity, with proposals on actions ranging from health promotion and disease prevention to treatment and rehabilitation. The third care line of this document, "neonatal screening: neonatal heel prick," focuses on an important test carried out with newborns that prioritizes early detention of possible diseases, as well as subsequent treatment and appropriate follow-up (2)(3)(4)(5) .
The National Neonatal Screening Program, established in 2001, integrates biological, hearing, and eye neonatal screening (1) . The program is committed to developing policies, programs (child health care and care for people with disability), and care networks of the Brazilian Unified Health System (SUS, its acronym in Portuguese), such as the Stork Network and the Care Network for the Disabled Person (1) .
Biological neonatal screening, which is the theme of the present study, has as its purpose, by means of blood collection in the heel area of newborns (NB), early detection of metabolic, genetic, enzymatic, and endocrine disorders, such as: phenylketonuria; congenital hypothyroidism; sickle cell anemia and other hemoglobinopathies; cystic fibrosis; biotinidase deficiency; and congenital adrenal hyperplasia.
Although they are commonly asymptomatic in the neonatal period, these conditions have a high potential for causing damage, with repercussions on children's growth and development (1,6) .
Infants who present results indicating any type of disorder must be monitored and receive medical followup during treatment (3)(4)(5) . For appropriate identification of diseases, newborns should have their blood collected between the third and fifth day of life, and women should receive guidance, while still in pregnancy, on the need for and importance of this test, and become aware that families have the right of access to its results (1,(7)(8) .
Studies carried out in Brazil have shown evolution in the coverage of neonatal screening in the North (9) , Northeast (10) , and South (11) regions, with the last showing optimization of arrival time of samples for analysis (11) , which enables early diagnosis and calling families in for the beginning of appropriate treatment of infants in cases of positive results (1,11) .
Biological neonatal screening is extremely important for children's health, and they have the right to care, access to early diagnosis, and referral to specialized care services within an appropriate time (2)(3)(4)(5)7) .
The commitment of Brazilian cities to the organization and implementation of the National Neonatal Screening Program was essential for these results, as well as the active participation of municipal health departments (SMS, its acronym in Portuguese), through control actions and monitoring of healthcare units (1) . These measures effectively contributed to achieving the program's objectives (7,10) .
In the city where the present study was carried out,

Method
This was a cross-sectional study with a quantitative approach, carried out in a medium-sized city in the state of São Paulo, Brazil, which has five health regions, called "health districts" (central, southern, eastern, northern, and western). Primary healthcare units and family healthcare units in all these regions carry out blood collection for biological neonatal screening. Regarding the hospital network, the city has eight hospitals, of which five provide care for users of the SUS (four provide childbirth and birth care) and three are private hospitals.
In addition, the city has eight private laboratories that also undertake screening tests.
To operationalize the flow of NB after discharge from maternity hospitals that provide care for users of the SUS to healthcare units, as well as to ensure that biological neonatal screening is carried out within the recommended time frame, while the NB are still in the hospital maternity units, a nursing team of the program Floresce uma Vida schedules dates for the tests, on the same day as the first appointment with the nurse in the healthcare unit, between three and five days of life (12) .
Since the program Floresce uma Vida acts in public hospital maternities in the city, this type of service is not available for children born in private hospitals; however, some of these NB get to primary healthcare units by spontaneous demand. In addition, some infants born in these hospitals have their blood and type of user. This last item was subdivided into public healthcare services, defined as SUS users, and private healthcare services, indicated as SUS non-users (those who make use of public healthcare services only for biological neonatal screening collection). The city also meets childbirth and delivery demands from other locations; however, it does not undertake biological neonatal screening for these infants. Therefore, infants who did not reside in the city were excluded.
The following variables were analyzed: "place of collection", a categorical variable made up of healthcare unit, hospital, or laboratory; "child's age at collection," a continuous variable obtained by calculating the difference between the date of collection and the date of birth; and "type of user," a categorical variable made up of SUS users and SUS non-users. It is worth mentioning that the age variable was categorically described in the database, with the following four intervals: three to five days; six to seven days; eight to ten days; and >11 days.
Since the database was digitized in Excel worksheets, the processing was carried out by means of management of this database. The Statistical Package for the Social Sciences 16.0 (SPSS) was used for this purpose.
In the analysis, the NB were characterized regarding the variables of interest, seeking for information identifying access to biological neonatal screening within the period recommended by the Brazilian Ministry of Health. The period from three to five days of life was defined as early access (7) . In addition, possible associations between the dependent variable "child's age at collection" and the independent variables "place of collection" (healthcare unit, hospital, and laboratory) and "type of user" (SUS users and SUS non-users) were investigated, by means of application of the chi-squared test.

Results
In the two years analyzed in the present study, 15 Rev. Latino-Am. Enfermagem 2020;28:e3266.  To verify associations between the study's variables of interest, values of the intervals "eight to ten days" and ">11 days" were grouped; these were considered beyond the period recommended for carrying out this test. The Cochran-Mantel-Haenszel test found a statistically significant association between "child's age" and "place of collection" for both years, as indicated in Table 1. The variable "type of user" was considered when collections were only analyzed in healthcare units, with a statistically significant association for 2016, as shown in Table 2.

Discussion
With the purpose of providing appropriate treatment to NB in the pre-symptomatic phase for possible congenital diseases (2)(3)(4) , biological neonatal screening must be undertaken between the third and fifth day of life, in order to provide early diagnosis of these diseases and initiate appropriate care (3,5,7) .
The results of the present study show that the city is meeting this recommendation, since the mean of collection by healthcare units in the period recommended as ideal was considered higher, compared to tests undertaken after the fifth day of life.

Evaluations of coverage in other Brazilian regions
have also presented significant results, evidencing the effectiveness of a program directed to this type of test, which, when well-based and organized, is able to provide appropriate care in newborns' first week of life (9) .
The commitment of the city to the management of the neonatal screening program significantly contributes to an increase in records for NB, as well as collection and sending of the test to the reference service in neonatal screening (10) .
Regarding the present study, biological neonatal screening tests were carried out for more than 90% of the NB, most in healthcare network units of the city.
These values were higher than those found by other authors (77.1%) (13) . In 2016 and 2017, 93% and 97% of the newborns, respectively, underwent collection in the carrying out the test. However, one study showed that mothers' knowledge about this test did not cover its entire meaning, but was restricted to specific guidance provided by healthcare professionals who instructed them to take the NB to a healthcare unit within the ideal period (19) . It is worth mentioning that mothers often receive this recommendation at a moment of fragility during hospital discharge, simultaneously with a lot of other information (health surveillance with follow-up of child growth and development, immunization, birth certificate, and breastfeeding). This may lead to lack of understanding regarding the diseases investigated by this test and the need to undertake it between the newborn's third and fifth day of life.
In this context, nurses play an important role in teaching about and carrying out the neonatal screening process, since they are the professionals who are most in contact with mothers and NB, in addition to other family members. Therefore, they can make use of valuable tools such as education and health promotion, and take advantage of situations such as prenatal care, to build, together with mothers, knowledge regarding the test.
It is worth mentioning that, according to the needs of each patient, these meetings may last longer, and, when they are well-conducted and concluded, the women are better prepared, biologically and psychologically, to absorb the concepts learned (19)(20) .
The reasons that some infants underwent biological neonatal screening at a higher age than that recommended were not identified, which is considered a