Wednesday, March 5, 2014

HLHS Collaborative: February's Action Period Call

February's Action Period Call updates are brought to you by Trent Neely and Rivkah Reichmann:
Action packed summarizes this month’s call!  Each of the two calls began with a presentation of recent research derived from NPC-QIC's multi-institutional data set.
On Thursday's call, Dr. David Brown from Boston began with discussing a recent study regarding the association between Prenatal Diagnosis (PD) and Morbidity. Previous studies yielded variable results, indicating some benefits, as well as some downfalls. The recent data is now indicating more benefits to PD, such as decreased valve regurgitation, ventricular dysfunction, and shorter ventilator time post-surgery. One area that was not included in the study was parent stress. Parents were able to jump in and provide their experiences with PD and the ability to prepare for hospitalization and the interstage period.  

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 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.

According to parents on the call, February's AP Call was probably the most engaging call of the past year. 
Please keep the discussion going by providing your thoughts and experiences on the following research topics:
Prenatal Diagnosis:  Were you prenatally diagnosed? Was this beneficial to help you prepare or was it too much stress? How did either experience help you with care? 
Interstage Monitoring: Did your center offer daily or weekly home monitoring? Did you find it helpful? More stressful? Less stressful? If you didn't have home monitoring, did you wish you did, or did you feel calmer without the stress of worrying about home monitoring?

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!