The Omaha single ventricle team (Dr. Kugler, Carman DeMare NP, and Jenny Strawn RN) traveled to Cincinnati the beginning of May for the National Pediatric Cardiology Quality Improvement Collaborative (NPCQIC) Learning Session. We were fortunate to have Dr. Patel, a cardiology fellow, attend the meeting with us but we missed having our parent team members (Anne Dee Weisdorfer and Brian/Lisa Luke) accompany us on this trip. We’re very proud of our parent involvement and feel fortunate to have had a parent with us at all prior Learning Sessions (LS).
There are currently 57 centers participating in this collaborative which is currently focusing on HLHS babies during the interstage (defined in the collaborative as between initial discharge following the Norwood/Sano repair and the Glenn surgery around 4 months of age). Below are some of the topics discussed at the recent LS and the location of the presenter. We’d be happy to answer your questions or provide you with more information regarding any of these topics. You can direct your questions to firstname.lastname@example.org.
Improving care coordination and communication with primary care physicians (Stanford)
The CHAMP platform for interstate monitoring (Kansas City)
“Cardiac High Acuity Monitoring Program”
Improve the move: a journey to discharge (Dallas)
Discussed parent perspective, journey board, discharge rounds, discharge checklist
Innovative use of technology for single ventricle patient care (Columbus, OH)
EASE app used to increase communication with families during surgery
Association between digoxin and interstage mortality
Discussed the evidence for the relationship between digoxin use & reduced interstage mortality among infants without an arrhythmia
Phase 2 Update
Discussed plans for pilot and implementation over the next 12 months. Phase 2 will include HLHS babies but extend the time from diagnosis (including prenatal) to the first year of life.
Update from the Work Group (Dr. Kugler is co-chair with parent Stacey Lihn from Phoenix). Select centers (we were one) presented their data. The Transparency
Work Group also held a retreat and has many projects planned.
Prenatal Counseling for HLHS & other single ventricle heart disease (Boston)
Stress on families, fetal checklist for parent visit, parent binder
Journey boards – helpful tool or not?
Breastfeeding – supporting, educating & encouraging families to provide human milk (Chicago)
Building our community
Enhance collaboration & innovation in the NPCQIC – physicians, nurses, parents