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

Proost, Lien De; Boer, Angret de; Reiss, Irwin K M; Steegers, Eric A.P.; Verhagen, Eduard; Hogeveen, Marije; Geurtzen, Rosa; Verweij, E. J.

doi:10.1111/apa.16866

Cited by 3 publications

(1 citation statement)

References 49 publications

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“…Next to the discussion on the use of outcome parameters, it matters how these are communicated to parents. For example, adults who were born preterm expressed concerns that using a calculator-or model-derived prognosis could make people feel as if they are just a number [51]. Furthermore, the manner in which calculated risks and chances are communicated to parents matters [52].…”

Section: Individualizing Prenatal Counselling and Decision Makingmentioning

confidence: 99%

Opportunities and Challenges of Prognostic Models for Extremely Preterm Infants

de Boer,

van Beek,

Andriessen

et al. 2023

Children

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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. At a population level, these models could support the development of guidelines for decisions about treatment limits and may support policy processes such as benchmarking and resource allocation. At an individual level, these models may enhance prenatal counselling conversations by considering multiple variables and improving transparency about expected outcomes. Furthermore, they may improve consistency in projections shared with parents. For the development of prognostic models, we discuss important considerations such as predictor and outcome measure selection, clinical impact assessment, and generalizability. Lastly, future recommendations for developing and using prognostic models are suggested. Importantly, the purpose of a prognostic model should be clearly defined, and integrating these models into prenatal counselling requires thoughtful consideration.

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Section: Individualizing Prenatal Counselling and Decision Makingmentioning

confidence: 99%

Opportunities and Challenges of Prognostic Models for Extremely Preterm Infants

de Boer,

van Beek,

Andriessen

et al. 2023

Children

Self Cite

View full text Add to dashboard Cite

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

De Proost,

de Boer,

Verhagen

et al. 2024

Arch Dis Child Fetal Neonatal Ed

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ObjectiveTo 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.DesignNineteen semistructured qualitative interviews were conducted with Dutch parents who experienced (imminent) extremely premature births between 23+5 and 26+2 weeks of gestation. Diversity was aimed for through purposive sampling from a database created prior to this study. Four of the parents opted for palliative care. Among the parents who chose intensive care, in nine cases the infant(s) survived.ResultsAll participants acknowledged the necessity of having a periviability guideline because it would provide valuable decision-making support, and counterbalance decisions solely based on parental instincts to save their infant. Parents preferred guidelines that considered multiple prognostic factors beyond GA alone, without overwhelming parents with information, because more information would not necessarily make the decision easier for parents. Personalisation was defined by parents mainly as ‘being seen and heard’ and associated with building relationships with healthcare professionals and effective communication between them and professionals.ConclusionsThe results underscore the importance of having a periviability guideline including multiple prognostic factors to assist parents in making decisions at the limit of viability, and the importance of a personalised care approach to meet parental needs in the context of imminent extremely preterm birth.

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

Verhoeven,

Kooi,

Obermann-Borst

et al. 2024

BMJ Open

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IntroductionNecrotising 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. In such cases, palliative care, aimed to minimise suffering, may be considered as an alternative to laparotomy, especially when the infant’s expected quality of life and overall prognosis are concerning. Depending on the sociocultural context, parents are increasingly involved in this decision. However, weighing the risks, benefits and uncertainties can be challenging for them. Therefore, we aim to develop a decision support tool using a novel combination of the Delphi technique and Q-methodology. Ultimately, we anticipate that this approach will contribute to improved family-centred care and optimised outcomes.Methods and analysisThe first phase of the study aims to identify key factors guiding Dutch parents’ decisions between laparotomy and palliative care (decision factors). Using a Delphi process, parents with varying perspectives and experiences will evaluate decision factors found in the literature and those self-suggested. The pertinent set of decision factors is defined during a consensus meeting.During the second phase, parents are asked to compare statements about these decision factors using Q-methodology. A by-person factor analysis of these comparisons will identify different parental decision-making profiles, which allows for formulating advice tailored to those profiles.Ultimately, we will build an online decision support tool which facilitates the classification of parent perspectives. The tool will then provide the parents with the relevant advice. In the last phase of the study, the tool’s effectiveness will be evaluated through an online questionnaire, asking parents to imagine using the tool in a real-world scenario.Ethics and disseminationEthical approval has been obtained from Central Ethics Review Committee of The University Medical Center Groningen (METc 2023/577, CTc UMCG 153660). Participants will be asked to provide their informed consent for the parts of the study that involve non-anonymous data gathering. Findings will be disseminated through academic journals and conferences. Options for long-term data preservation are under consideration.

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

Cited by 3 publications

References 49 publications

Opportunities and Challenges of Prognostic Models for Extremely Preterm Infants

Opportunities and Challenges of Prognostic Models for Extremely Preterm Infants

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

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

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