Wednesday, March 5, 2014
HLHS Collaborative: February's Action Period Call
On Monday's call, Dr. Matt Oster from Atlanta discussed a study regarding home monitoring. There was a discussion of some data on home monitoring. While the data reviewed didn't seem to correlate daily/weekly home monitoring with decrease in mortality or readmission rates, it did seem to impact weight gain. Those with daily home monitoring had better weight gain than those without home monitoring. The nurses and doctors on the call really wanted to hear from the parents -- they were interested in knowing whether home monitoring added to parents' anxiety and stress levels, or helped alleviate anxiety and stress. A good discussion was had of some of the benefits of home monitoring, and some of the challenges. The study, in particular, did carry it's own limitations, including omitting hybrid patients, excluding those with no echo data, and not having access center specifics.
Following discussion on these NPC studies, teams were updated on efforts made by the Research and Publications Committee. The Parent Leadership Team requested a summary of findings from a recent study on the relationship between Prenatal Diagnosis, birth location, and mortality. This is a valuable tool to help parents understand research studies. The first "Research Explained" can be found on the SBH blog and NPC-QIC's research page. Based on the response from this first review, NPC will continue "research explained." If you have come across a study or abstract relevant to HLHS and NPC's work, please feel free to email a link to firstname.lastname@example.org and we'll pass it along to the Committee. Additionally, NPC's Research & Publications Committee is adding two parent representatives to assist in reviewing manuscripts/abstracts and research explained projects.
Each call finished with review of survey results obtained from centers aimed at exploring various interstage practices. Some of the discussion surrounded center practices regarding red flags, interstage care, and frequency of follow up care. The discussion flowed into a discussion of reasoning behind frequency of visits and proximity to center. Some discussion was had regarding becoming more transparent in sharing data and protocols and the fortunate timing of NPC's new Transparency Workgroup.
Thank you for your continued engagement and your participation. Each comment shared improves the experience and outcome for future HLHS families. We look forward to meeting many of you at April's NPC-QIC Learning Session in Cincinnati!