UNC is improving its care of pregnant women and children in the context of a Trisomy 13 or 18 diagnosis. Under the leadership of Dr. Wayne Price, the Trisomy 13/18 Workgroup has been formed to address this need. This interdisciplinary group is exploring a number of areas, including
•Increasing the consistency and accuracy of communication
•Improving caregiver/provider understanding of management options at UNC
•Increasing the sensitivity around the terminology use
•Improving collaboration between family and caregivers, and among medical providers
•Understanding the values of families and setting appropriate goals based on those values
•Improving provider/caregiver understanding of family decision-making
Below you will find informational documents for providers and families.
Resources for Providers
- Guiding Principles for care of patients with Trisomy 13 or 18
- What do physicians and other caregivers need to know about the Trisomy 13 and 18 genetic variations in the context of pregnancy, infancy, and childhood?
- Guide to Using Neutral Language
- Guide to Shared Decision-Making for Providers and Families
- Overview of shared decision-making for providers
- Surgery/Invasive Procedures for Infants with Trisomy 13 or 18
- Discharge Checklist
- References
