Experience with Parent Follow-Up for Communication Outcomes after Newborn Screening Identifies Carrier Status.

ABSTRACT:

Objective

To conduct interviews with a multiyear sample of parents of infants found to have heterozygous status for sickle cell hemoglobinopathy or cystic fibrosis during newborn blood screening (NBS).

Study design

Interviewers with clinical backgrounds telephoned parents, and followed a structured script that blended follow-up and research purposes. Recruiting followed several steps to minimize recruiting bias as much as possible for a NBS study.

Results

Follow-up calls were conducted with parents of 426 infant carriers of sickle cell hemoglobinopathy, and 288 parents of cystic fibrosis carriers (34.8% and 49.6% of those eligible). Among these, 27.5% and 7.8% had no recollection of being informed of NBS results. Of those who recalled a provider explanation, 8.6% and

SUBMITTER: Farrell MH 

PROVIDER: S-EPMC7483722 | biostudies-literature | 2020 Sep

REPOSITORIES: biostudies-literature