Table 2.

Main results of the NBS questionnaire.

	Participants (%)
All parents n = 1000
Did your child do the test?
Yes, the hospital provided orientation and asked me about it before doing it	65
Yes, the hospital did it automatically without asking me	27
No	2
I don't know/I don't recall	6
Parents of children who underwent NBS test (n = 913)
Sample collection for NBS
On the day of birth	30
One day after birth	27
Two to five days after birth	24
One week after birth	8
One month or more after birth	1
Do not remember	9
Other	1
First breastfeeding or formula intake before sample collection for NBS
I don't know/I don't remember	26
Yes	63
No	11
Suggestion of expanded NBS
Yes, but I refused it	6
Yes, and I had it done	20
It was not offered	26
I don't know what expanded newborn screening is	48
Hospital explanation about NBS purpose
It was clearly explained	46
It was more or less clearly explained	25
It was not explained very clearly	11
The purpose was not explained	18
NBS results reviewed by the child's pediatrician
Yes	54%
No	16%
I do not remember	30%
Parents of children who had positive NBS test results n = 101
Responsible for reporting the positive NBS to parents
Childbirth Hospital	34
Newborn Screening Reference Service	23
Pediatrician	27
Social assistant	13
Level of explanation about the diagnosis and next steps
Explained clearly	62
Explained more or less clearly	22
Explained unclearly	8
He did not explain anything and asked us to go to the referral service for NBS in my city.	8
Parents of children who did not do NBS test n = 24
Did refuse the test and why
Yes, because I see it as a suffering for the baby	4
Yes, because I had no guidance and I was afraid	12
Yes, because I see no advantages in taking the exam	17
I did not refuse, but still the test was not done	67