@Article{chd.12442,
AUTHOR = {Waldemar F. Carlo, James F. Cnota, Robert J. Dabal, Jeffrey B. Anderson},
TITLE = {Practice trends over time in the care of infants with hypoplastic left heart syndrome: A report from the National Pediatric Cardiology Quality Improvement Collaborative},
JOURNAL = {Structural and Congenital Heart Disease},
VOLUME = {12},
YEAR = {2017},
NUMBER = {3},
PAGES = {315--321},
URL = {http://www.techscience.com/schd/v12n3/39116},
ISSN = {3071-1738},
ABSTRACT = {<b>Objective:</b> The National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) was
established in 2008 to improve outcomes of hypoplastic left heart syndrome (HLHS) during the
interstage period. They evaluated changes in patient variables and practice variation between early
and late eras.<br/>
<b>Design:</b> Data including demographic, operative, discharge, and follow-up variables from the first
100 patients (6/2008–1/2010) representing 18 centers were compared with the most recent 100
patients (1/2014–11/2014) from these same centers.<br/>
<b>Results:</b> Prenatal diagnosis increased from 69% to 82% (P = .05). There were no differences in
gestational age or weight at Norwood. A composite of any preoperative risk factor occurred more
frequently in the early era (59% vs. 34%, P< .01). While mean age at Norwood was similar (8.3 vs.
6.6 days, P = .2), the standard deviation was significantly lower in the recent era (10.4–6.4 days,
P = .04). Use of RV-PA conduit increased (67%–84%, P < .01). Rates of complete discharge communication with both the primary care physician (31%–97%, P< .01) and primary cardiologist
(44%–97%, P < .01) increased substantially. There were limited changes in feeding strategies. Use
of home monitoring program increased (76%–99%, P< .01) with all participants in the late era
monitoring both oxygen saturation and weight.<br/>
<b>Conclusions:</b> Among NPC-QIC centers contributing patients to both eras, there were significant
changes in preoperative risk factors, surgical strategy, discharge communication, and interstage
care. Further study is required to determine an association between these changes and decreased
mortality.},
DOI = {10.1111/chd.12442}
}