Shared decision making for infants born at the threshold of viability: a prognosis-based guideline

Lemyre, Brigitte; Daboval, Thierry; Dunn, Sandra; Kekewich, Michael; Jones, Griff; Wang, D; Mason-Ward, Martha; Moore, Gregory P.

doi:10.1038/jp.2016.81

Cited by 42 publications

(34 citation statements)

References 72 publications

(87 reference statements)

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“…The American Association of Pediatrics (AAP) also states that decision making is the primary focus of prenatal counseling at the limits of viability—to which we agree [7]. Thereby, this decision making involves more than medical factors, it is of utmost importance to be empathic, provide support, and give parents hope during the counseling [3, 30, 40, 49]. …”

Section: Discussionmentioning

confidence: 99%

Professionals’ preferences in prenatal counseling at the limits of viability: a nationwide qualitative Dutch study

Geurtzen¹,

Heijst²,

Draaisma³

et al. 2017

Eur J Pediatr

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Prenatal counseling practices at the limits of viability do vary, and constructing a counseling framework based on guidelines, professional and parental preferences, might achieve more homogeneity. We aimed to gain insight into professionals’ preferences on three domains of counseling, particularly content, organization, and decision making and their influencing factors. A qualitative, nationwide in-depth exploration among Dutch perinatal professionals by semi-structured interviews in focus groups was performed. Regarding content of prenatal counseling, preparing parents on the short-term situation (delivery room care) and revealing their perspectives on “quality of life” were considered important. Parents should be informed on the kind of decision, on the difficulty of individual outcome predictions, on survival and mortality figures, short- and long-term morbidity, and the burden of hospitalization. For organization, the making of and compliance with agreements between professionals may promote joint counseling by neonatologists and obstetricians. Supportive materials were considered useful but only when up-to-date, in addition to the discussion and with opportunity for personalization. Regarding decision making, it is not always clear to parents that a prenatal decision needs to be made and they can participate, influencing factors could be, e.g., unclear language, directive counseling, overload of information, and an immediate delivery. There is limited familiarity with shared decision making although it is the preferred model. Conclusion: This study gained insight into preferred content, organization, and decision making of prenatal counseling at the limits of viability and their influencing factors from a professionals’ perspective. What is Known: • Heterogeneity in prenatal counseling at the limits of viability exists • Differences between preferred counseling and actual practice also exists What is New: • Insight into preferred content, organization, and decision making of prenatal periviability counseling and its influencing factors from a professionals’ perspective. Results should be taken into account when performing counseling. • Particularly the understanding of true shared decision making needs to be improved. Furthermore, implementation of shared decision making in daily practice needs more attention.

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Section: Discussionmentioning

confidence: 99%

Professionals’ preferences in prenatal counseling at the limits of viability: a nationwide qualitative Dutch study

Geurtzen¹,

Heijst²,

Draaisma³

et al. 2017

Eur J Pediatr

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“…To avoid duplication of the assessments and considering the costs associated with administering and interpreting the Bayley-III, it was felt that the ASQ3 done by the physician during the visit would be sufficient to support most of our NNFU clinic team decisions. The Bayley-III is still provided, however, for children born at less than 26 weeks gestational age, mainly for research purposes and to collect local standardized long term outcome statistics, to provide accurate information to mothers at risk of delivering an extremely preterm infant and their partners, when participating in a shared decision making process [ 24 ].…”

Section: Discussionmentioning

confidence: 99%

ASQ3 and/or the Bayley-III to support clinicians' decision making

et al. 2017

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BackgroundAppropriate tools are essential to support a clinician’s decision to refer very preterm infants to developmental resources. Streamlining the use of developmental assessment or screening tools to make clinical decisions offers an alternative methodology to help to choose the most effective way to assess this very high-risk population.ObjectiveTo examine the influence of the Ages and Stages Questionnaire-3rd edition (ASQ3) and the Bayley Scales of Infant Development-3rd edition (Bayley-III) scores within a clinically-based decision-making process.MethodsThis retrospective cohort study includes children born at less than 29 weeks gestation who had completed both psychologist-administered Bayley-III and physician-observed ASQ3 assessments at 18 months corrected age. Theoretical referral decisions (TRDs) based on each assessment results were formulated, using cut-off scores between the lower first and second standard deviation values and below the lower second standard deviation values. TRDs to refer to developmental resources were evaluated in light of the multidisciplinary team’s actual final integrated decisions (FID).ResultsComplete data was available for 67 children. The ASQ3 and the Bayley-III had similar predictive value for the FID, with comparable kappa values. Comparisons of the physicians’ and psychologists’ TRDs with the FIDs demonstrated that the ASQ3 in conjunction with the medical and socio-familial findings predicted 93% of referral decisions.ConclusionTaking into consideration potential methodological biases, the results suggest that either ASQ3 or Bayley-III, along with socio-environmental, medical and neurological assessment, are sufficient to guide the majority of clinicians’ decisions regarding referral for specialty services. This retrospective study suggests that the physician-supervised ASQ3 may be sufficient to assess children who had been extremely preterm infants for referral purposes. The findings need to be confirmed in a larger, well-designed prospective study to minimize and account for potential sources of bias.

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“…In an emergency situation, such as ours, there is then the added complexity of having insufficient time to engage in conversation at the level needed for shared‐decision‐making. Shared decision‐making largely assumes a pre‐existing relationship, and therefore trust, between the professional and individual (in this case the parent), or the need for multiple meetings and discussions to build that trust . In the absence of time or a prior relationship, can there truly be shared decision‐making?…”

Section: Difficult Decision‐makingmentioning

confidence: 99%

‘Whatever decision you make it will be the right one’: A parent's reflection on difficult decision‐making in premature birth

O’Neill

2019

J Paediatrics Child Health

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In 2007, our daughter Lily was born prematurely. My husband and I were faced with a very difficult decision about the level of intervention for her, a decision that had to be made in an emergency situation under the pressure of time. As a paediatric nurse I had more knowledge about prematurity than most parents, and it was certainly enough to appreciate the fragility of babies born early, and their uncertain and often complicated path through neonatal intensive care. What I didn't fully appreciate was the key role of health professionals, not only in providing care, but in supporting difficult decision-making. In the years since Lily's birth I've also reflected on the power of health professionals to shape, or reshape, the narrative of premature birth which is pivotal in the long-term psychological trajectory of parents.

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Shared decision making for infants born at the threshold of viability: a prognosis-based guideline

Abstract: A novel framework, based on prognosis, was generated to guide when early intensive and palliative care may both be offered to expectant parents. Pre-implementation assessment is underway to identify barriers and facilitators to putting in practice.

Cited by 42 publications

References 72 publications

Professionals’ preferences in prenatal counseling at the limits of viability: a nationwide qualitative Dutch study

Professionals’ preferences in prenatal counseling at the limits of viability: a nationwide qualitative Dutch study

ASQ3 and/or the Bayley-III to support clinicians' decision making

‘Whatever decision you make it will be the right one’: A parent's reflection on difficult decision‐making in premature birth

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