The Pediatric Cardiac Critical Care Consortium (PC4) is a multi-institutional quality improvement registry focused on the care delivered in the cardiac ICU for patients with CHD and acquired heart disease. To assess data quality, a rigorous procedure of data auditing has been in place since the inception of the consortium.

This report describes the data auditing process and quantifies the audit results for the initial 39 audits that took place after the transition from version one to version two of the registry’s database.

In total, 2219 total encounters were audited for an average of 57 encounters per site. The overall data accuracy rate across all sites was 99.4%, with a major discrepancy rate of 0.52%. A passing score is based on an overall accuracy of >97% (achieved by all sites) and a major discrepancy rate of <1.5% (achieved by 38 of 39 sites, with 35 of 39 sites having a major discrepancy rate of <1%). Fields with the highest discrepancy rates included arrhythmia type, cardiac arrest count, and current surgical status.

The extensive PC4 auditing process, including initial and routinely scheduled follow-up audits of every participating site, demonstrates an extremely high level of accuracy across a broad array of audited fields and supports the continued use of consortium data to identify best practices in paediatric cardiac critical care.

There is limited understanding of the cognitive profiles of Spanish-speaking children with Attention-Deficit/Hyperactivity Disorder (ADHD). The current study investigated the cognitive cluster profiles of Puerto Rican Spanish-speaking children with ADHD using the Wechsler Intelligence Scales for Children-Fourth Edition Spanish (WISC-IV Spanish) Index scores and examined the association between cognitive cluster profiles with other potentially relevant factors.

Hierarchical cluster analysis was used to identify WISC-IV clusters in a sample of 165 Puerto Rican children who had a primary diagnosis of ADHD. To examine the validity of the ADHD clusters, analysis of variances and chi-square analyses were conducted to compare the clusters across sociodemographics (e.g., age and education), type of ADHD diagnosis (ADHD subtype, Learning Disorder comorbidity), and academic achievement.

Clusters were differentiated by level and pattern of performance. A five-cluster solution was identified as optimal that included (C1) multiple cognitive deficits, (C2) processing speed deficits, (C3) generally average performance, (C4) perceptual reasoning strengths, and (C5) working memory deficits. Among the five clusters, the profile with multiple cognitive deficits was characterized by poorer performance on the four WISC-IV Spanish Indexes and was associated with adverse sociodemographic characteristics.

Results illustrate that there is substantial heterogeneity in cognitive abilities of Puerto Rican Spanish-speaking children with ADHD, and this heterogeneity is associated with a number of relevant outcomes.

Neurodevelopmental impairment is increasingly recognised as a potentially disabling outcome of CHD and formal evaluation is recommended for high-risk patients. However, data are lacking regarding the proportion of eligible children who actually receive neurodevelopmental evaluation, and barriers to follow-up are unclear. We examined the prevalence and risk factors associated with failure to attend neurodevelopmental follow-up clinic after infant cardiac surgery.

Survivors of infant (<1 year) cardiac surgery at our institution (4/2011-3/2014) were included. Socio-demographic and clinical characteristics were evaluated in neurodevelopmental clinic attendees and non-attendees in univariate and multivariable analyses.

A total of 552 patients were included; median age at surgery was 2.4 months, 15% were premature, and 80% had moderate–severe CHD. Only 17% returned for neurodevelopmental evaluation, with a median age of 12.4 months. In univariate analysis, non-attendees were older at surgery, had lower surgical complexity, fewer non-cardiac anomalies, shorter hospital stay, and lived farther from the surgical center. Non-attendee families had lower income, and fewer were college graduates or had private insurance. In multivariable analysis, lack of private insurance remained independently associated with non-attendance (adjusted odds ratio 1.85, p=0.01), with a trend towards significance for distance from surgical center (adjusted odds ratio 2.86, p=0.054 for ⩾200 miles).

The majority of infants with CHD at high risk for neurodevelopmental dysfunction evaluated in this study are not receiving important neurodevelopmental evaluation. Efforts to remove financial/insurance barriers, increase access to neurodevelopmental clinics, and better delineate other barriers to receipt of neurodevelopmental evaluation are needed.

Clinical databases in congenital and paediatric cardiac care provide a foundation for quality improvement, research, policy evaluations and public reporting. Structured audits verifying data integrity allow database users to be confident in these endeavours. We report on the initial audit of the Pediatric Cardiac Critical Care Consortium (PC4) clinical registry.

Participants reviewed the entire registry to determine key fields for audit, and defined major and minor discrepancies for the audited variables. In-person audits at the eight initial participating centres were conducted during a 12-month period. The data coordinating centre randomly selected intensive care encounters for review at each site. The audit consisted of source data verification and blinded chart abstraction, comparing findings by the auditors with those entered in the database. We also assessed completeness and timeliness of case submission. Quantitative evaluation of completeness, accuracy, and timeliness of case submission is reported.

We audited 434 encounters and 29,476 data fields. The aggregate overall accuracy was 99.1%, and the major discrepancy rate was 0.62%. Across hospitals, the overall accuracy ranged from 96.3 to 99.5%, and the major discrepancy rate ranged from 0.3 to 0.9%; seven of the eight hospitals submitted >90% of cases within 1 month of hospital discharge. There was no evidence for selective case omission.

Based on a rigorous audit process, data submitted to the PC4 clinical registry appear complete, accurate, and timely. The collaborative will maintain ongoing efforts to verify the integrity of the data to promote science that advances quality improvement efforts.