Grant Application

Katherine P. Himes, MD, MS, Magee-Womens Hospital of UPMC and UPP Women’s Health

Proposed Innovation

Parents who deliver during the periviable (extremely premature) period face the extraordinary challenge of participating in decisions about whether to use life support for their infant(s) born on the cusp of viability. Families must grasp complex medical information about their baby’s immediate prognosis and risk for significant long-term morbidity. Compounding the situation, parents often have to arrive at treatment decisions quickly as clinical situations evolve rapidly. Although these decisions are among the most important parents will face, a number of studies have identified shortcoming in the counseling families receive that threatens the quality of decision making and may contribute to patient anxiety. Moreover, there are no validated strategies to improve decision making in this clinical context.

This project was designed to address this gap by developing a tablet-based decision support tool to improve shared decision making by families facing delivery of extremely premature infants.


Through this project, interviews were conducted with 30 health care providers and 20 families who had experienced a periviable birth to identify shortcomings in communication that can compromise the shared decision making process. A prototype tool was developed to address these shortcomings and later revised with additional feedback from key stakeholders and families. The tool now includes:

  • Standardized information regarding infant survival and long-term outcomes
  • Simple graphics to communicate complex issues
  • A 10-minute video that includes interviews with families — who delivered during the periviable period — relating their experience with raising children with a range of long-term complications
  • Values clarification exercises to help patients reach decisions that reflect their values
  • Supplemental resources for families to access after meeting with the medical team


The decision support tool has been well received by critical stakeholders. Their feedback proved instrumental in the development of the innovative video designed to help patients understand the possible long-term outcomes of their decisions. Additional studies will be conducted to evaluate the video’s effectiveness and assess the overall impact of the tool on decision making for pregnant patients facing periviable delivery. Providing consistent and understandable information about immediate and long-term prognosis — along with values exercises — is expected to help families participate in shared decision making and arrive at decisions that reflect their values.