Development of a parent decision support tool for surgical necrotising enterocolitis: a study protocol.

Introduction: Necrotising enterocolitis is a devastating gastrointestinal disease predominantly affecting preterm infants. In 40% of cases, its rapid progression renders conservative treatment insufficient, necessitating laparotomy as the sole viable option for survival. However, high perioperative and postoperative mortality rates, along with severe future potential disabilities and suffering, can complicate the decision of whether surgery is still in the infant's best interest.

Voices of experience: what Dutch parents teach us about values and intuition in periviable decisions.

Objective: When extremely premature birth at the limits of viability is imminent, shared decision-making with parents regarding the infant's treatment is widely recommended. Aligning decisions with parental values can be challenging. So, this study aims to get insight into (1) what values parents considered important in their decision, (2) whether their decision was based on intuition and/or rational analysis and (3) parental suggestions on how to help explore and articulate values during prenatal counselling.

Voices of experience: insights from Dutch parents on periviability guidelines and personalisation.

Objective: To investigate the perspectives of experienced parents regarding guidelines and personalisation for managing imminent extremely premature births (22-26 weeks gestational age (GA)) . The study examined four scenarios: no guideline, a guideline based on GA, a guideline based on GA plus other factors and a guideline based on a calculated prognosis.

Design: Nineteen semistructured qualitative interviews were conducted with Dutch parents who experienced (imminent) extremely premature births between 23+5 and 26+2 weeks of gestation.

Mind the gap: Comparing parents' information needs about impending preterm birth to current clinical practices using a mixed methods approach.

Objective: To identify parents' information needs about impending very preterm birth and compare these needs to current information practices in the Netherlands.

Methods: Step 1: We surveyed  = 203 parents of preterm infants to assess their information needs. Data were analyzed using inductive thematic analysis.

Incorporating parental values in complex paediatric and perinatal decisions.

Incorporating parental values in complex medical decisions for young children is important but challenging. In this Review, we explore what it means to incorporate parental values in complex paediatric and perinatal decisions. We provide a narrative overview of the paediatric, ethics, and medical decision-making literature, focusing on value-based and ethically complex decisions for children who are too young to express their own preferences.

Opportunities and Challenges of Prognostic Models for Extremely Preterm Infants.

Predicting the short- and long-term outcomes of extremely preterm infants remains a challenge. Multivariable prognostic models might be valuable tools for clinicians, parents, and policymakers for providing accurate outcome estimates. In this perspective, we discuss the opportunities and challenges of using prognostic models in extremely preterm infants at population and individual levels.

Perspectives of extremely prematurely born adults on what to consider in prenatal decision-making: a qualitative focus group study.

Objective: A shared decision-making (SDM) approach is recommended for prenatal decisions at the limit of viability, with a guiding role for parental values. People born extremely premature experience the consequences of the decision made, but information about their perspectives on prenatal decisions is lacking. Therefore, this study aims to describe their perspectives on what is important in decision-making at the limit of viability.

Exploring professionals' views regarding prenatal counselling in congenital diaphragmatic hernia.

Objectives: Congenital diaphragmatic hernia (CDH) is a congenital malformation in which the diaphragm and lungs are underdeveloped, leading to cardiorespiratory and other problems. This study aimed to explore professionals' views regarding prenatal counselling in CDH.

Methods: A qualitative study was performed among healthcare professionals involved in the care of CDH patients in Radboud university medical center Amalia Children's Hospital.

Adults born prematurely prefer a periviability guideline that considers multiple prognostic factors beyond gestational age.

Aim: The aim of the study was to explore the perspectives of adults born prematurely on guidelines for management at extreme premature birth and personalisation at the limit of viability.

Methods: We conducted four 2-h online focus group interviews in the Netherlands.

Results: Twenty-three participants born prematurely were included in this study, ranging in age from 19 to 56 years and representing a variety of health outcomes.

Dutch professionals' discussion preferences with the parents of extremely premature infants varied, but the trend was towards shared decision-making.

Aim: We explored professionals' views on sharing decision-making with parents before and after an extremely preterm birth and what healthcare professionals considered severe outcomes.

Methods: A nationwide, multi-centre online survey was carried out among a wide range of perinatal healthcare professionals in the Netherlands from 4 November 2020 to 10 January 2021. The medical chairs of all nine Dutch Level III and IV perinatal centres helped to disseminate the survey link.

A scoping review of parental values during prenatal decisions about treatment options after extremely premature birth.

Aim: To describe what is known in the literature about parental perspectives in making prenatal decisions regarding treatment after birth at the limit of viability, as a better understanding of parental values can help professionals support parents as they decide.

Methods: PubMed, Cochrane, Embase, CINAHL, PsycINFO and Web of Science were searched to identify relevant literature from 1 January 2010 to 22 April 2022 on parental decision making. Data were extracted from selected studies and organised into themes.

Neonatal Long-Chain 3-Ketoacyl-CoA Thiolase deficiency: Clinical-biochemical phenotype, sodium-D,L-3-hydroxybutyrate treatment experience and cardiac evaluation using speckle echocardiography.

Isolated long-chain 3-keto-acyl CoA thiolase (LCKAT) deficiency is a rare long-chain fatty acid oxidation disorder caused by mutations in LCKAT is part of a multi-enzyme complex called the mitochondrial trifunctional protein (MTP) which catalyzes the last three steps in the long-chain fatty acid oxidation. Until now, only three cases of isolated LCKAT deficiency have been described. All patients developed a severe cardiomyopathy and died before the age of 7 weeks.

What hinders and helps in the end-of-life decision-making process for children: Parents' and physicians' views.

Aim: To investigate the main factors which facilitate or hinder end-of-life decision-making (EoLDM) in neonates and children.

Methods: A qualitative inductive, thematic analysis was performed of interviews with a total of 73 parents and 71 physicians. The end-of-life decisions mainly concern decisions to withhold or withdraw life-sustaining treatment.

Digital decision aid for prenatal counseling in imminent extreme premature labor: development and pilot testing.

Background: In case of extreme premature delivery at 24 weeks of gestation, both early intensive care and palliative comfort care for the neonate are considered treatment options. Prenatal counseling, preferably using shared decision making, is needed to agree on the treatment option in case labor progresses. This article described the development of a digital decision aid (DA) to support pregnant women, partners and clinicians in prenatal counseling for imminent extreme premature labor.

Prenatal counseling for extreme prematurity at the limit of viability: A scoping review.

Objectives: To explore, based on the existing body of literature, main characteristics of prenatal counseling for parents at risk for extreme preterm birth.

Methods: A scoping review was conducted searching Embase, Medline, Web of Science, Cochrane, CINAHL, and Google Scholar.

Results: 46 articles were included.

Dutch guidelines on care for extremely premature infants: Navigating between personalisation and standardization.

Objective: There is no international consensus on what type of guideline is preferred for care at the limit of viability. We aimed to conceptualize what type of guideline is preferred by Dutch healthcare professionals: 1) none; 2) gestational-age-based; 3) gestational-age-based-plus; or 4) prognosis-based via a survey instrument. Additional questions were asked to explore the grey zone and attitudes towards treatment variation.

Decision-making in imminent extreme premature births: perceived shared decision-making, parental decisional conflict and decision regret.

Objective: To describe levels of perceived shared decision making (SDM), decisional conflict (DC), and decision regret (DR) in prenatal counseling by pregnant women, partners, neonatologists, and obstetricians regarding decision-making around imminent extreme premature birth in which a decision about palliative comfort care versus early intensive care had to be made.

Study Design: Multicenter, cross-sectional study using surveys to determine perceived SDM at imminent extreme premature birth in parents and physicians, and to determine DC and DR in parents.

Results: In total, 73 participants from 22 prenatal counseling sessions were included (21 pregnant women, 20 partners, 14 obstetricians, 18 neonatologists).

The Edge of Perinatal Viability: Understanding the Dutch Position.

The current Dutch guideline on care at the edge of perinatal viability advises to consider initiation of active care to infants born from 24 weeks of gestational age on. This, only after extensive counseling of and shared decision-making with the parents of the yet unborn infant. Compared to most other European guidelines on this matter, the Dutch guideline may be thought to stand out for its relatively high age threshold of initiating active care, its gray zone spanning weeks 24 and 25 in which active management is determined by parental discretion, and a slight reluctance to provide active care in case of extreme prematurity.

Development of Nationwide Recommendations to Support Prenatal Counseling in Extreme Prematurity.

Objectives: To develop a nationwide, evidence-based framework to support prenatal counseling in extreme prematurity, focusing on organization, decision-making, content, and style aspects.

Methods: A nationwide multicenter RAND-modified Delphi method study was performed between November 2016 and December 2017 in the Netherlands. Firstly, recommendations were extracted from literature and previous studies.

Prenatal counseling in extreme prematurity - Insight into preferences from experienced parents.

Objective: In-depth analysis of parental preferences in prenatal counseling in extreme prematurity.

Methods: A nationwide qualitative interview study among experienced parents of extremely premature babies born at 24 - 24 weeks of gestation. Semi-structured interviews were held until saturation, transcribed and qualitatively analyzed to search for parental counseling preferences.

Appraisal of a scoring instrument for training and testing neonatal intubation skills.

Objective: To determine the validity, reliability, feasibility and applicability of a neonatal intubation scoring instrument.

Design: Prospective observational study.

Setting: Simulation-based research and training centre (Center for Advanced Pediatric and Perinatal Education), California, USA.

Various experiences and preferences of Dutch parents in prenatal counseling in extreme prematurity.

Objective: To investigate experienced and preferred prenatal counseling among parents of extremely premature babies.

Methods: A Dutch nationwide, multicenter, cross-sectional study using an online survey. Surveys were sent to all parents of extremely premature babies born between 2010 and 2013 at 24-24 weeks of gestation.

Perspectives on periviability counselling and decision-making differed between neonatologists in the United States and the Netherlands.

Aim: American guidelines suggest that neonatal resuscitation be considered at 23 weeks of gestation, one week earlier than in the Netherlands, but how counselling practices differ at the threshold of viability is unknown. This pilot study compared prenatal periviability counselling in the two countries.

Methods: In 2013, a cross-sectional survey was sent to 121 Dutch neonatologists as part of a nationwide evaluation of prenatal counselling.