title: Shared decision making for infants born at the threshold of viability: a prognosis-based guideline.
abstract: Making prenatal decisions regarding resuscitation of extremely premature infants, based on gestational age alone is inadequate. We developed a prognosis-based guideline.
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: Division of Neonatology, Department of Obstetrics, Gynecology and Newborn Care, The Ottawa Hospital, Ottawa, Canada.
authors.forename: B
authors.initials: B
authors.lastname: Lemyre
authors.affiliation: Division of Neonatology, Department of Obstetrics, Gynecology and Newborn Care, The Ottawa Hospital, Ottawa, Canada.
authors.forename: T
authors.initials: T
authors.lastname: Daboval
authors.affiliation: CHEO Research Institute, Ottawa, Canada.|Better Outcomes Registry & Network (BORN), Ottawa, Canada.
authors.forename: S
authors.initials: S
authors.lastname: Dunn
authors.affiliation: Department of Clinical and Organizational Ethics, The Ottawa Hospital, Ottawa, Canada.
authors.forename: M
authors.initials: M
authors.lastname: Kekewich
authors.affiliation: Division of Neonatology, Department of Obstetrics, Gynecology and Newborn Care, The Ottawa Hospital, Ottawa, Canada.
authors.forename: G
authors.initials: G
authors.lastname: Jones
authors.affiliation: Division of Neonatology, Department of Obstetrics, Gynecology and Newborn Care, The Ottawa Hospital, Ottawa, Canada.
authors.forename: D
authors.initials: D
authors.lastname: Wang
authors.affiliation: Champlain Maternal Newborn Regional Program, Ottawa, Canada.
authors.forename: M
authors.initials: M
authors.lastname: Mason-Ward
authors.affiliation: Division of Neonatology, Department of Obstetrics, Gynecology and Newborn Care, The Ottawa Hospital, Ottawa, Canada.
authors.forename: G P
authors.initials: GP
authors.lastname: Moore
mesh_terms: D002170:Canada; D003657:Decision Making; D005865:Gestational Age; D006801:Humans; D007223:Infant; D062071:Infant, Extremely Premature; D007231:Infant, Newborn; D017410:Practice Guidelines as Topic; D011379:Prognosis; D011788:Quality of Life; D012151:Resuscitation / Q000379:methods / Q000592:standards*; D062606:Tertiary Care Centers