Maternal knowledge and attitudes about newborn screening for sickle cell disease and cystic fibrosis

Abstract

Illinois introduced mandatory newborn screening (NBS) for sickle cell disease (SCD) in 1989 and for cystic fibrosis (CF) in 2008. We examined maternal understanding of NBS for SCD and CF, and their knowledge of the genetics, symptoms and treatments of both conditions. Our methods consisted of conducting interviews of inpatient post-partum women (>18 years and English speaking). Our results showed that of the 388 eligible participants, 34 self-identified as sickle cell carriers, 1 with SCD and 1 as a CF carrier. Almost 3/4 were African American (282/387). Although all but 5 women had prenatal care, only 35% (133/378) recalled their prenatal care provider mentioning NBS, and only 56% (217/388) of participants recalled nursery staff mentioning NBS. There was more self-reported familiarity with SCD (3.32/5) than CF (1.97/5, p<0.001). Over 2/3 (260/388) of participants could not answer CF knowledge questions because they had never heard of CF. Among those who had heard of the conditions, mean knowledge scores were 66% for SCD (n=372) and 63% for CF (n=128). Bivariate analysis identified education, age, race, marital status, and insurance status as statistically significant. After linear regression education remained significant for both conditions. We conclude that in a sample of predominantly African American post-partum women, we found poor understanding of NBS, greater familiarity with SCD, and significant knowledge gaps for both SCD and CF. There are many missed educational opportunities for educating parents about NBS and specific conditions included in NBS panels in both the obstetric clinics and the nursery.

Provision of information about newborn screening antenatally: a sequential exploratory mixed-methods project

“…being included in the review, 8,12,14,15,17,19,20,25,26,[28][29][30]33, covering NBS in a number of different countries: England (n = 11 8,14,25,62,66,70,72,[78][79][80]83 ), Wales (n = 2 85,86 ), France (n = 1 89 ), Germany (n = 1 15 ), the Netherlands (n = 1 29 ), USA (n = 20 17,19,26,30,33,61,63,64,71,[74][75][76]81,82,84,87,88,90,91,93 ), Canada (n = 4 12,65,…”

“…73 However, a common finding in the literature was that parents have knowledge gaps that raise concerns about their preparedness to make an informed decision. 26,[28][29][30]33,68,93 Some parents were aware of this and admitted that they had made a decision about NBS without knowing information about symptoms, treatment, severity and hereditability. 76 Other studies, however, suggested that parents were not aware of their limited knowledge.…”

Triagem neonatal: o conhecimento materno em uma maternidade no interior do Paraná, Brasil

“…Em um estudo sobre o conhecimento materno acerca da TN, realizado pelo Departamento de Pediatria da Universidade de Chicago, os resultados encontrados mostraram que apenas 35% das mulheres avaliadas receberam informações sobre a TN no pré-natal, e 56% no berçário (19) . Diferentemente dos dados obtidos em nosso estudo onde 45% das mulheres foram informadas sobre a realização do "teste do pezinho", através de profissionais de saúde do hospital por ocasião do nascimento anterior de outros filhos.…”

“…600 ção do sangue. Fazer anti-sepsia no local correto do pé, com o algodão ligeiramente umedecido no álcool 70%, puncionar com lanceta estéril e descartável num movimento único e firme; desprezar sempre a primeira formação de gota de sangue; não comprimir demasiado, evitando a hemóli-se e iniciar a coleta, deixando sempre o sangue pingar no papel filtro, observando os círculos e o preenchimento completo nos dois lados do papel.Em um estudo sobre o conhecimento materno acerca da TN, realizado pelo Departamento de Pediatria da Universidade de Chicago, os resultados encontrados mostraram que apenas 35% das mulheres avaliadas receberam informações sobre a TN no pré-natal, e 56% no berçário (19) . Diferentemente dos dados obtidos em nosso estudo onde 45% das mulheres foram informadas sobre a realização do "teste do pezinho", através de profissionais de saúde do hospital por ocasião do nascimento anterior de outros filhos.…”

Indifferent or Uninformed? Reflections of Health Professionals on Parental Education and Consent for Expanded Newborn Screening in Israel, 2008–2016

“…While the knowledge regarding parental understanding, preferences, and satisfaction toward NBS education during the prenatal period is growing [6][7][8][9][10] and, in many cases, the lack thereof is explicitly criticized [11], the attitudes and reflections of health professionals on parental education and informed consent for NBS remains under-investigated [12]. This paper presents the findings of an empirical study exploring the views of officials and practicing physicians involved in the NBS process in Israel regarding issues of informed consent and parental education.…”