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. Participants shared their perspectives on different types of guidelines for managing extremely premature birth. They agreed that a guideline was necessary to prevent arbitrary treatment decisions and to avoid physician bias. All participants favoured a guideline that is based upon multiple prognostic factors beyond gestational age. They emphasised the importance of discretion, regardless of the type of guideline used. Discussions centred mainly on the heterogeneity of value judgements about outcomes after extreme premature birth. Participants defined personalisation as 'not just looking at numbers and statistics'. They associated personalisation mainly with information provision and decision-making. Participants stressed the importance of involving families in decision-making and taking their care needs seriously. CONCLUSION: Adults born prematurely prefer a periviability guideline that considers multiple prognostic factors and allows for discretion.

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. RESULTS: We received 769 survey responses. Most respondents (53%) preferred to place equal emphasis on two treatment options during shared prenatal decision-making: early intensive care or palliative comfort care. The majority (61%) wanted to include a conditional intensive care trial as a third treatment option, but 25% disagreed. Most (78%) felt that healthcare professionals were responsible for initiating postnatal conversations to justify continuing or withdrawing neonatal intensive care if complications were associated with poor outcomes. Finally, 43% were satisfied with the current definitions of severe long-term outcomes, 41% were unsure and there were numerous for a broader definition. CONCLUSION: Although Dutch professionals expressed diverse preferences on how to reach decisions about extremely premature infants, we observed a trend towards shared decision-making with parents. These results could inform future guidelines.

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). High perceived levels of SDM were found (median 82,2), and low levels of DC (median 23,4) and DR at one month (median 12, 5). CONCLUSIONS: Reported levels of self-perceived SDM in the setting of prenatal counseling in extreme prematurity were high, by both the parents and the physicians. Levels of DC and DR were low.

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. In this article, we explore the Dutch position more thoroughly. First, we briefly look at the previous and current Dutch guidelines. Second, we position them within the Dutch socio-cultural context. We focus on the Dutch prioritization of individual freedom, the abortion law and the perinatal threshold of viability, and a culturally embedded aversion of suffering. Lastly, we explore two possible adaptations of the Dutch guideline; i.e., to only lower the age threshold to consider the initiation of active care, or to change the type of guideline.

Preferred prenatal counselling at the limits of viability: a survey among Dutch perinatal professionals.

BACKGROUND: Since 2010, intensive care can be offered in the Netherlands at 24+0 weeks gestation (with parental consent) but the Dutch guideline lacks recommendations on organization, content and preferred decision-making of the counselling. Our aim is to explore preferred prenatal counselling at the limits of viability by Dutch perinatal professionals and compare this to current care. METHODS: Online nationwide survey as part of the PreCo study (2013) amongst obstetricians and neonatologists in all Dutch level III perinatal care centers (n = 205).The survey regarded prenatal counselling at the limits of viability and focused on the domains of organization, content and decision-making in both current and preferred practice. RESULTS: One hundred twenty-two surveys were returned out of 205 eligible professionals (response rate 60%). Organization-wise: more than 80% of all professionals preferred (but currently missed) having protocols for several aspects of counselling, joint counselling by both neonatologist and obstetrician, and the use of supportive materials. Most professionals preferred using national or local data (70%) on outcome statistics for the counselling content, in contrast to the international statistics currently used (74%). Current decisions on initiation care were mostly made together (in 99% parents and doctor). This shared decision model was preferred by 95% of the professionals. CONCLUSIONS: Dutch perinatal professionals would prefer more protocolized counselling, joint counselling, supportive material and local outcome statistics. Further studies on both barriers to perform adequate counselling, as well as on Dutch outcome statistics and parents' opinions are needed in order to develop a national framework. TRIAL REGISTRATION: Clinicaltrials.gov, NCT02782650 , retrospectively registered May 2016.

Prenatal (non)treatment decisions in extreme prematurity: evaluation of decisional conflict and regret among parents.

This corrects the article DOI: 10.1038/jp.2017.90.

Prenatal (non)treatment decisions in extreme prematurity: evaluation of Decisional Conflict and Regret among parents.

OBJECTIVE: To evaluate Decisional Conflict and Regret among parents regarding the decision on initiating comfort or active care in extreme prematurity and to relate these to decision-making characteristics. STUDY DESIGN: A nationwide, multicenter, cross-sectional study using an online survey in the Netherlands. Data were collected from March 2015 to March 2016 among all parents with infants born at 24+0/7-24+6/7 weeks gestational age in 2010-2013. The survey contained a Decisional Conflict and Decision Regret Scale (potential scores range from 0 to 100) and decision-making characteristics. RESULTS: Sixty-one surveys were returned (response rate 27%). The median Decisional Conflict score was 28. From the subscores within Decisional Conflict, 'values clarity' revealed the highest median score of 42-revealing that parents felt unclear about personal values for benefits and risks of the decision on either comfort care or active care. The median Decision Regret score was 0. Regret scores were influenced by the actual decision made and by outcome: Decision Regret was lower in the active care group and in the survivor group. CONCLUSION: We found little Decisional Conflict and no Decision Regret among parents regarding decision-making at 24 weeks gestation.