Katherine E. Bates

BACKGROUND: Infants with hypoplastic left heart syndrome remain at high risk during the interstage between stage 1 and stage 2 surgical palliations. As a multicenter Learning Health Network, the National Pediatric Cardiology Quality Improvement Collaborate uses collaborative research and improvement to improve hypoplastic left heart syndrome outcomes for infants. We evaluated whether our previously reported improvement in interstage survival from 90.5% to 94.8% was sustained over time. METHODS: Infants enrolled in the National Pediatric Cardiology Quality Improvement Collaborate clinical registry who underwent stage 1 surgical palliation and were discharged home during the interstage period were included. Patient demographics, hypoplastic left heart syndrome anatomic type, and neonatal hospitalization data in phase 1 (2008–2016) and phase 2 (2016–2025) were compared. Statistical process control was used to analyze rates of interstage survival, major adverse event readmissions, and growth failure. RESULTS: A total of 5495 patients (phase 1—2199, phase 2—3296) were enrolled from 77 centers, of which 38.7% were female and 11.2% had a major syndrome. The phase 2 cohort had a higher prevalence of RV-PA conduit (phase 1: 55.2% versus phase 2: 64.3%; P P P P Z score at stage 2 admission −1.5 versus −1.42; P <0.019). CONCLUSIONS: National Pediatric Cardiology Quality Improvement Collaborate sustained significant improvements in interstage outcomes through continued adherence to improvement processes, collaborative learning, and promoting best practices over time, including utilization of digoxin and NEONATE score.

Resource utilization estimates for hypoplastic left heart syndrome (HLHS) in early childhood are lacking. We linked the National Pediatric Cardiology Quality Improvement (NPC-QIC) clinical registry to the Pediatric Health Information Systems (PHIS) database to estimate hospital resource utilization for a contemporary HLHS cohort. All hospitals with both PHIS and NPC-QIC data available were eligible for inclusion. Patients discharged from their Norwood procedure 10/1/2009–9/30/2015 were linked using indirect identifiers. Estimated cost and length-of-stay data for all inpatient episodes across the first six years of life were calculated and reported per year of life. We linked 973/1175 (82.8%) unique patients from 33 centers. Complete costing records from birth to Fontan, transplant, or inpatient death < 6 years of age were available for 38%. For patients with complete cost estimate data, resource use was highest in the first year of life with an average cost of $450,124 (95% CI $397,094–$503,154) which corresponded to an average of 79 days (95% CI 72–86) in hospital. The total average cost in the first 6 years was $651,006 ($518,819–$783,193), with an average of 110 days (93–128) in hospital. Average hospitalization costs associated with each staged surgical procedure were $239,936 ($229,649–$250,223) for Norwood procedure, $143,292 ($126,383–$160,200) for stage 2 procedure, and $77,198 ($70,471–$83,925) for Fontan. Linking NPC-QIC clinical registry data to PHIS data to evaluate resource utilization is feasible. Resource utilization in HLHS is highest in the first year of life and remains high over the first six years of life.

BACKGROUND: The interstage period after discharge from stage 1 palliation carries high morbidity and mortality. The impact of social determinants of health on interstage outcomes is not well characterized. We assessed the relationship between childhood opportunity and acute interstage outcomes. METHODS: Infants discharged home after stage 1 palliation in the National Pediatric Quality Improvement Collaborative Phase II registry (2016–2022) were retrospectively reviewed. Zip code–level Childhood Opportunity Index (COI), a composite metric of 29 indicators across education, health and environment, and socioeconomic domains, was used to classify patients into 5 COI levels. Acute interstage outcomes included death or transplant listing, unplanned readmission, intensive care unit admission, unplanned catheterization, and reoperation. The association between COI level and acute interstage outcomes was assessed using logistic regression with sequential adjustment for potential confounders. RESULTS: The analysis cohort included 1837 patients from 69 centers. Birth weight ( P P =0.02) increased with COI level. Stage 1 length of stay decreased ( P =0.001), and exclusive oral feeding rate at discharge increased ( P <0.001), with higher COI level. More than 98% of patients in all COI levels were enrolled in home monitoring. Death or transplant listing occurred in 101 (5%) patients with unplanned readmission in 987 (53%), intensive care unit admission in 448 (24%), catheterization in 345 (19%), and reoperation in 83 (5%). There was no difference in the incidence or time to occurrence of any acute interstage outcome among COI levels in unadjusted or adjusted analysis. There was no interaction between race and ethnicity and childhood opportunity in acute interstage outcomes. CONCLUSIONS: Zip code COI level is associated with differences in preoperative risk factors and stage 1 palliation hospitalization characteristics. Acute interstage outcomes, although common across the spectrum of childhood opportunity, are not associated with COI level in an era of highly prevalent home monitoring programs. The role of home monitoring in mitigating disparities during the interstage period merits further investigation.

Background: Digoxin prescription in patients with single‐ventricle physiology after stage 1 palliation is associated with reduced interstage death. Prior literature has primarily included patients having undergone the Norwood procedure. We sought to determine if digoxin prescription at discharge in infants following hybrid stage 1 palliation was associated with improved transplant‐free interstage survival. Methods and Results: A retrospective multicenter cohort analysis was conducted using data from the National Pediatric Cardiology Quality Improvement Collaborative registry data from 2008 to 2021. Infants with functional single ventricles and aortic arch obstruction discharged home after the hybrid stage 1 palliation hospitalization were included. Patients were excluded if they had supraventricular tachycardia or conversion to Norwood operation. The primary outcome was transplant‐free survival. Multivariable logistic regression analysis including a propensity score for digoxin use identified associations between digoxin use and interstage death or transplant. Of 259 included infants from 45 sites, 158 (61%) had hypoplastic left heart syndrome. Forty‐nine percent had a gestational age ≤38 weeks, 18% had a birth weight P =0.06). With multivariate analysis, discharge digoxin prescription was associated with a lower risk of interstage death or transplant (adjusted odds ratio, 0.48 [95% CI, 0.24–0.93]; P =0.03). Conclusions: In infants with single‐ventricle physiology who underwent hybrid stage 1 palliation, digoxin prescription at hospital discharge was associated with improved interstage transplant‐free survival.

BACKGROUND AND OBJECTIVES: Standardized review of mortalities may identify potential system improvements. We designed a hospitalwide identification, review, and notification system for inpatient pediatric mortalities. METHODS: Key stakeholders constructed a future state process map for identification and review of deaths. An online mortality review form was modified through a series of Plan-Do-Study-Act cycles and spread to all pediatric services in January 2019. Mortalities occurring within 30 days of discharge were added in December 2019. Our primary outcome was percentage of mortalities reviewed, and the process measure was time to review completion. Additional Plan-Do-Study-Act cycles were used to refine 2 mechanisms for monthly notification of deaths. We surveyed monthly mortality notification e-mail recipients to elicit feedback to further improve notifications. RESULTS: After the pilot, 284 of 328 (86.6%) of mortalities were reviewed. Average time to review completion decreased by 49% compared with baseline after an increase during the first year of the pandemic. Qualitative analysis of a subset of these mortalities showed that 154 of 229 (67.2%) underwent further review. We added a summary of mortalities by unit to a monthly hospitalwide safety report and developed monthly mortality notification e-mails. The survey showed that 89% of respondents (70 of 79) learned about a death they did not know about, 58% (46 of 79) sought additional information through discussion with a colleague, and 76% (65 of 86) agreed that the notifications helped process grief. CONCLUSIONS: We describe an effective and well-received approach to the identification, review, and notification of mortalities at an academic pediatric hospital, which may be useful at other institutions.

Background: The National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) lacks a rigorous enrollment audit process, unlike other collaborative networks. Most centers require individual families to consent to participate. It is unknown whether there is variation across centers or biases in enrollment.Methods: We used the Pediatric Cardiac Critical Care Consortium (PC⁴) registry to assess enrollment rates in NPC-QIC for those centers participating in both registries using indirect identifiers (date of birth, date of admission, gender, and center) to match patient records. All infants born 1/1/2018–12/31/2020 and admitted 30 days of life were eligible. In PC⁴, all infants with a fundamental diagnosis of hypoplastic left heart or variant or who underwent a surgical or hybrid Norwood or variant were eligible. Standard descriptive statistics were used to describe the cohort and center match rates were plotted on a funnel chart.Results: Of 898 eligible NPC-QIC patients, 841 were linked to 1,114 eligible PC⁴ patients (match rate 75.5%) in 32 centers. Match rates were lower in patients of Hispanic/Latino ethnicity (66.1%, p = 0.005), and those with any specified chromosomal abnormality (57.4%, p = 0.002), noncardiac abnormality (67.8%, p = 0.005), or any specified syndrome (66.5%, p = 0.001). Match rates were lower for patients who transferred to another hospital or died prior to discharge. Match rates varied from 0 to 100% across centers.Conclusions: It is feasible to match patients between the NPC-QIC and PC⁴ registries. Variation in match rates suggests opportunities for improvement in NPC-QIC patient enrollment.

Background: Congenital heart disease practices and outcomes vary significantly across centers, including postoperative chest tube (CT) management, which may impact postoperative length of stay (LOS). We used collaborative learning methods to determine whether centers could adapt and safely implement best practices for CT management, resulting in reduced postoperative CT duration and LOS. Methods and Results: Nine pediatric heart centers partnered together through 2 learning networks. Patients undergoing 1 of 9 benchmark congenital heart operations were included. Baseline data were collected from June 2017 to June 2018, and intervention‐phase data were collected from July 2018 to December 2019. Collaborative learning methods included review of best practices from a model center, regular data feedback, and quality improvement coaching. Center teams adapted CT removal practices (eg, timing, volume criteria) from the model center to their local resources, practices, and setting. Postoperative CT duration in hours and LOS in days were analyzed using statistical process control methodology. Overall, 2309 patients were included. Patient characteristics did not differ between the study and intervention phases. Statistical process control analysis showed an aggregate 15.6% decrease in geometric mean CT duration (72.6 hours at baseline to 61.3 hours during intervention) and a 9.8% reduction in geometric mean LOS (9.2 days at baseline to 8.3 days during intervention). Adverse events did not increase when comparing the baseline and intervention phases: CT replacement (1.8% versus 2.0%, P =0.56) and readmission for pleural effusion (0.4% versus 0.5%, P =0.29). Conclusions: We successfully lowered postoperative CT duration and observed an associated reduction in LOS across 9 centers using collaborative learning methodology.