The American College of Cardiology has published clinical practice algorithms for common congenital heart lesions, including atrial septal defect, patent ductus arteriosus, valvar pulmonary stenosis, aortic coarctation, and ventricular septal defect. The purpose of this study was to define the current practice patterns in the management of these lesions and describe the impact of departure from these recommendations.

This was a retrospective analysis of the most recent 100 outpatient appointments for each lesion at our centre. Electronic medical records were queried to determine whether the scheduling, testing, and follow-up plan for each appointment were consistent with the published algorithms.

A total of 500 visits were evaluated (150 new visits; 350 follow-up visits); 32% (n = 162) of encounters did not receive appropriate testing, 37% (n = 186) departed from recommended follow-up plans, and of the 350 follow-up visits, 45% (n = 156) departed from scheduling guidelines. Impact of these departures was quantified in reference to over- or under-expenditure of clinical resources. Of the aberrant testing encounters, 60% (n = 97) saw too few tests. Of the deviant follow-up plans created, 74% (n = 138) brought patients back to clinic too soon.

This study explores the deviation between current practice patterns and published clinical care guidelines. There is considerable variation across domain of analysis, diagnosis, and encounter type, resulting in uneven resource utilisation. Standardisation of care in these areas will improve utilisation and can be a starting point for improvement work.

Syncope is common among pediatric patients and is rarely pathologic. The mechanisms for symptoms during exercise are less well understood than the resting mechanisms. Additionally, inert gas rebreathing analysis, a non-invasive examination of haemodynamics including cardiac output, has not previously been studied in youth with neurocardiogenic syncope.

This was a retrospective (2017–2023), single-center cohort study in pediatric patients ≤ 21 years with prior peri-exertional syncope evaluated with echocardiography and cardiopulmonary exercise testing with inert gas rebreathing analysis performed on the same day. Patients with and without symptoms during or immediately following exercise were noted.

Of the 101 patients (15.2 ± 2.3 years; 31% male), there were 22 patients with symptoms during exercise testing or recovery. Resting echocardiography stroke volume correlated with resting (r = 0.53, p < 0.0001) and peak stroke volume (r = 0.32, p = 0.009) by inert gas rebreathing and with peak oxygen pulse (r = 0.61, p < 0.0001). Patients with syncopal symptoms peri-exercise had lower left ventricular end-diastolic volume (Z-score –1.2 ± 1.3 vs. –0.36 ± 1.3, p = 0.01) and end-systolic volume (Z-score –1.0 ± 1.4 vs. −0.1 ± 1.1, p = 0.001) by echocardiography, lower percent predicted peak oxygen pulse during exercise (95.5 ± 14.0 vs. 104.6 ± 18.5%, p = 0.04), and slower post-exercise heart rate recovery (31.0 ± 12.7 vs. 37.8 ± 13.2 bpm, p = 0.03).

Among youth with a history of peri-exertional syncope, those who become syncopal with exercise testing have lower left ventricular volumes at rest, decreased peak oxygen pulse, and slower heart rate recovery after exercise than those who remain asymptomatic. Peak oxygen pulse and resting stroke volume on inert gas rebreathing are associated with stroke volume on echocardiogram.

CHD is the most common birth defect type, with one-fourth of patients requiring intervention in the first year of life. Caregiver understanding of CHD may vary. Health literacy may be one factor contributing to this variability.

The study occurred at a large, free-standing children’s hospital. Recruitment occurred at a free-of-charge CHD camp and during outpatient cardiology follow-up visits. The study team revised the CHD Guided Questions Tool from an eighth- to a sixth-grade reading level. Caregivers of children with CHD completed the “Newest Vital Sign” health literacy screen and demographic surveys. Health literacy was categorised as “high” (Newest Vital Sign score 4–6) or “low” (score 0–3). Caregivers were randomised to read either the original or revised Guided Questions Tool and completed a validated survey measuring understandability and actionability of the Guided Questions Tool. Understandability and actionability data analysis used two-sample t-testing, and within demographic group differences in these parameters were assessed via one-way analysis of variance.

Eighty-two caregivers participated who were largely well educated with a high income. The majority (79.3%) of participants scored “high” for health literacy. No differences in understanding (p = 0.43) or actionability (p = 0.11) of the original and revised Guided Questions Tool were noted. There were no socio-economic-based differences in understandability or actionability (p > 0.05). There was a trend towards improved understanding of the revised tool (p = 0.06).

This study demonstrated that readability of the Guided Questions Tool could be improved. Future work is needed to expand the study population and further understand health literacy’s impact on the CHD community.

There is variation in care of secundum atrial septal defects. Defects <3 mm and patent foramen ovale are not clinically significant. Defects >3 mm are often followed clinically and may require closure. Variation in how these lesions are monitored may result in over-utilisation of routine studies and higher than necessary patient charges.

To determine utilisation patterns for patients with secundum atrial septal defects diagnosed within the first year of life and compare to locally developed optimal utilisation standard to assess charge savings.

This was a retrospective chart review of patients with secundum atrial septal defects diagnosed within the first year of life. Patients with co-existing cardiac lesions were excluded. Total number of clinic visits, electrocardiograms, and echocardiograms were recorded. Total charge was calculated based on our standard institutional charges. Patients were stratified based on lesion and provider type and then compared to “optimal utilisation” using analysis of variance statistical analysis.

Ninety-seven patients were included, 40 had patent foramen ovale (or atrial septal defect <3 mm), 43 had atrial septal defects not requiring intervention and 14 had atrial septal defects requiring intervention. There was a statistically significant difference in mean charge above optimal for these lesions of $1033, $2885, and $5722 (p < 0.02), respectively. There was statistically significant variation of charge among types of provider as well. Average charge savings per patient would be $2530 with total charge savings of $242,472 if the optimal utilisation pathway was followed.

Using optimal utilisation and decreasing variation could save the patient significant unnecessary charges.