Experiences of a High-Risk Population with Prenatal Hemoglobinopathy Carrier Screening in a Primary Care Setting: a Qualitative Study

Carrier screening for hemoglobinopathies (HbPs; sickle cell disease and thalassemia) aims to facilitate autonomous reproductive decision-making. In the absence of a Dutch national HbP carrier screening program, some primary care midwives offer screening on an ad hoc basis. This qualitative descriptive study explores how pregnant women perceive an offer of HbP carrier screening by their midwife. Semi-structured interviews (n = 26) were conducted with pregnant women at risk of being a HbP carrier, and whom were offered screening at their booking appointment in one of two midwifery practices in Amsterdam. The results showed that half of the respondents were familiar with HbPs. Generally, women perceived the offer of HbP carrier screening as positive, and most women (n = 19) accepted screening. Seven declined, of whom two already knew their carrier status. Important reasons to accept screening were to obtain knowledge about their own carrier status and health of their unborn child, and the ease of the procedure. A multistep process of decision-making was observed, as many women did not give follow-up testing (e.g. partner, invasive diagnostics) much consideration while deciding on accepting or declining HbP screening. Women experienced information overload, and preferred receiving the information at a different moment (e.g. before the intake by a leaflet, or preconceptionally). In conclusion, while prenatal HbP carrier screening is perceived as positive, informed decision-making seems to be suboptimal, and both the content and timing of the information provided needs improvemen

The LENTE Study:The Effectiveness of Prophylactic Intramuscular Oxytocin in the Third Stage of Labor Among Low-Risk Women in Primary Care Midwifery Practice: A Randomized Controlled Trial

PURPOSE: To test third stage management of labor for low-risk women comparing routine prophylactic intramuscular oxytocin management versus modified expectant management. STUDY DESIGN: Randomized controlled multicenter trial in primary care midwifery practice. MAJOR FINDINGS: 32.4% of women in the prophylactic intramuscular oxytocin management group had blood loss of 500 mL or more versus 44.2% in the modified expectant management group, relative risk (RR) 0.61, 95% confidence interval (CI) [0.50, 0.74]. The percentage of women experiencing postpartum hemorrhage (PPH) defined as more than 1,000 mL blood loss was 6.3% in the prophylactic intramuscular oxytocin management group versus 11.9% in the modified expectant management group (RR 0.50, 95% CI [0.36, 0.71]). The type of management showed no significant differences between the two groups in clinically relevant indicators of women's short-term health such as the number of referrals, treatment given, hemoglobin level 36 hours postpartum, and breastfeeding rates after 1 week. Medium-term health such as hemoglobin level at 6 weeks postpartum, women's perceptions of tiredness, and breastfeeding rates at 3 months after birth also showed no differences between the two groups. CONCLUSION: Third stage management by means of routine prophylactic intramuscular oxytocin reduced the risk of postpartum hemorrhage in a group of childbearing women at low risk of complications in primary midwifery care compared to modified expectant third stage management, but there was no evidence this was associated with a reduction in clinically relevant adverse health outcomes

Parents' views on accepting, declining, and expanding newborn bloodspot screening.

Introduction The goal of newborn bloodspot screening (NBS) is the early detection of treatable disorders in newborns to offer early intervention. Worldwide, the number of conditions screened for is expanding, which might affect public acceptance. In the Netherlands, participation is high (>99%), but little is known about how parents perceive NBS. This study assessed parents' views on accepting, declining and expanding NBS. Methods A total of 804 of 6051 (13%) invited parents who participated in NBS in the Netherlands during the last two weeks of December 2019, and 48 of 1162 (4%) invited parents who declined participation in NBS in 2019 and 2020, completed a questionnaire. Results The most important reason for parents to participate in NBS was to prevent health complaints, whereas the most important reason to decline NBS was parents' viewpoint on life and the belief that the heel prick would be painful for the child. Compared to NBS participants, respondents who declined NBS were more actively religious, considered alternative medicine or lifestyle more important, were less inclined to vaccinate their child for infectious diseases, and reported more doubt about NBS participation (all differences p < .001). Informed choice was lower among respondents who declined NBS (44%) compared to participants in NBS (83%, p < .001), mostly due to insufficient knowledge. Of the NBS participants, 95% were positive about NBS expansion. Most NBS participants agreed to include conditions that could unintentionally reveal a diagnosis in the mother instead of the child (86%) or a condition that may not cause symptoms until later in the child's life (84%). Conclusion Most participants made an informed decision to participate in NBS and are positive about screening for more conditions. Insights into parents' views on (non-)participation and expansion of NBS can help to ensure that NBS suits the population needs while safeguarding ethical principles for screening