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

Journal of Perinatology volume 36, pages 503–509 (2016)Cite this article

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Abstract

Objective:

Making prenatal decisions regarding resuscitation of extremely premature infants, based on gestational age alone is inadequate. We developed a prognosis-based guideline.

Study Design:

We followed a five step approach and used the AGREE II framework: (1) systematic review and critical appraisal of published guidelines; (2) identification of key medical factors for decision making; (3) systematic reviews; (4) creation of a multi-disciplinary working group and (5) external consultation and appraisal.

Result:

No published guideline met high-quality appraisal criteria. Survival, neurodevelopmental disability, quality of life of child and parents, and maternal mortality and risk of long-term morbidity were identified as key for quality decision-making. Eighteen stakeholders (including parents) advocated for the incorporation of parents’ values and preferences in the process.

Conclusion:

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.

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Acknowledgements

We would like to acknowledge the contribution of the SDM for EPI working group members (Sonia Baruzzo, Karen Dryden-Kiser, Clare Giroux, Sarah Henderson, Nancy Paquin, Claudia Smith, Sarah Smith, Julie Wenge, Daniel Wilton and Amanda Wilton).

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Authors and Affiliations

  1. Division of Neonatology, Department of Obstetrics, Gynecology and Newborn Care, The Ottawa Hospital, Ottawa, Canada

    B Lemyre, T Daboval, G Jones, D Wang & G P Moore

  2. CHEO Research Institute, Ottawa, Canada

    S Dunn

  3. Better Outcomes Registry & Network (BORN), Ottawa, Canada

    S Dunn

  4. Department of Clinical and Organizational Ethics, The Ottawa Hospital, Ottawa, Canada

    M Kekewich

  5. Champlain Maternal Newborn Regional Program, Ottawa, Canada

    M Mason-Ward

Authors
  1. B Lemyre
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  2. T Daboval
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  3. S Dunn
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  4. M Kekewich
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  5. G Jones
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  6. D Wang
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  7. M Mason-Ward
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  8. G P Moore
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Corresponding author

Correspondence to B Lemyre.

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Lemyre, B., Daboval, T., Dunn, S. et al. Shared decision making for infants born at the threshold of viability: a prognosis-based guideline. J Perinatol 36, 503–509 (2016). https://doi.org/10.1038/jp.2016.81

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