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

Area of Science:

• Neonatal Medicine
• Perinatal Decision-Making
• Clinical Guideline Development

Background:

• Current prenatal decisions for extremely premature infants rely solely on gestational age, which is insufficient.
• Existing guidelines lack high-quality appraisal criteria for complex neonatal care.

Purpose of the Study:

• To develop a novel, prognosis-based guideline for prenatal decisions regarding resuscitation of extremely premature infants.
• To incorporate key medical factors, parental values, and quality of life into decision-making.

Main Methods:

• A five-step approach was employed, including systematic reviews and appraisal using the AGREE II framework.
• A multi-disciplinary working group and external consultation were integral to the process.
• Key factors identified included survival, neurodevelopmental disability, quality of life, and maternal outcomes.

Main Results:

• No existing guidelines met high-quality appraisal standards.
• Survival, neurodevelopmental outcomes, quality of life (child and parents), and maternal morbidity were critical decision factors.
• Stakeholders, including parents, emphasized the importance of incorporating patient values and preferences.

Conclusions:

• A new prognosis-based framework was developed to guide the offering of early intensive or palliative care to expectant parents.
• This framework aims to improve prenatal decision-making for extremely premature infants.
• Pre-implementation assessment is ongoing to facilitate the practical application of the guideline.