Position Paper: fragmented youth healthcare services in the Netherlands endanger treatment of teenage boys with psychiatric disorders.

For children who show strongly deviant behaviour in the Netherlands, a distinction is made between behavioural problems and psychiatric problems. As a result, two different domains have emerged over time, each with its own legal frameworks and inclusion and exclusion criteria. Consequently, there is no well-organized, coherent system for youth mental health care in the Netherlands. This strong dichotomy raises the question whether patients are being admitted to facilities where they are receiving appropriate care. In addition, referral bias can arise, because the type of complaint with which a young person presents is often dependent on the type of coping of the individual and thus, in turn, the gender of the patient. In this Position Paper, we examined the gender distribution at a youth psychiatric high and intensive care (HIC-Y) and other streams of youth care in the Netherlands to explore possible inequities in access to psychiatric care among children and adolescents. Results show that girls are significantly more likely than boys to be admitted to the HIC-Y for suicidal thoughts, self-harm and emotional dysregulation. In fact, girls account for 80% of all admissions, while boys account for only 20%. In contrast, regional and national reports from youth services and probation show a majority of boys being admitted (56-89%). The way care is organized (lack of cross-domain collaboration and the interplay between gender-dependent coping and exclusion criteria) seems to play a role in the underrepresentation of boys in acute psychiatry and their overrepresentation in secure youth care. Based on our research results, the concern is raised whether boys have a greater chance of undertreatment for psychiatric problems. Further research is needed to better understand the underlying factors that contribute to gender bias in psychiatric admissions, and to develop interventions that promote gender equality in healthcare.

Long-term outcomes of atrioventricular septal defect and single ventricle: A multicenter study.

OBJECTIVE: The study objective was to analyze survival and incidence of Fontan completion of patients with single-ventricle and concomitant unbalanced atrioventricular septal defect. METHODS: Data from 4 Dutch and 3 Belgian institutional databases were retrospectively collected. A total of 151 patients with single-ventricle atrioventricular septal defect were selected; 36 patients underwent an atrioventricular valve procedure (valve surgery group). End points were survival, incidence of Fontan completion, and freedom from atrioventricular valve reoperation. RESULTS: Median follow-up was 13.4 years. Cumulative survival was 71.2%, 70%, and 68.5% at 10, 15, and 20 years, respectively. An atrioventricular valve procedure was not a risk factor for mortality. Patients with moderate-severe or severe atrioventricular valve regurgitation at echocardiographic follow-up had a significantly worse 15-year survival (58.3%) compared with patients with no or mild regurgitation (89.2%) and patients with moderate regurgitation (88.6%) (P = .033). Cumulative incidence of Fontan completion was 56.5%, 71%, and 77.6% at 5, 10, and 15 years, respectively. An atrioventricular valve procedure was not associated with the incidence of Fontan completion. In the valve surgery group, freedom from atrioventricular valve reoperation was 85.7% at 1 year and 52.6% at 5 years. CONCLUSIONS: The long-term survival and incidence of Fontan completion in our study were better than previously described for patients with single-ventricle atrioventricular septal defect. A concomitant atrioventricular valve procedure did not increase the mortality rate or decrease the incidence of Fontan completion, whereas patients with moderate-severe or severe valve regurgitation at follow-up had a worse survival. Therefore, in patients with single-ventricle atrioventricular septal defect when atrioventricular valve regurgitation exceeds a moderate degree, the atrioventricular valve should be repaired.

Long-Term Follow-Up of Pericardium for the Ventricular Component in Atrioventricular Septal Defect Repair.

BACKGROUND: Despite the improved outcome in complete atrioventricular septal defect (AVSD) repair, reoperations for left atrioventricular valve (LAVV) dysfunction are common. The aim of this study was to evaluate the effect of fresh untreated autologous pericardium for ventricular septal defect (VSD) closure on atrioventricular valve function and compare the results with the use of treated bovine pericardial patch material. METHODS: Clinical and echocardiographic data were collected of patients with complete AVSD with their VSD closed with either untreated autologous pericardial or treated bovine pericardial patch material between January 1, 1996, and December 31, 2003. Evaluation closed in September 2019. RESULTS: A total of 77 patients were analyzed (untreated autologous pericardial VSD patch: 59 [77%], treated bovine pericardial VSD patch: 18 [23%]). Median age at surgery was 3.6 (interquartile range [IQR]: 2.7-4.5) months, and median weight was 4.5 (IQR: 3.9-5.1) kg. Trisomy 21 was present in 70 (91%) patients. Median follow-up time was 17.5 (IQR: 12.6-19.8) years. Death <30 days occurred in two (3%) patients. Reinterventions occurred in eight patients (early [within 30 days] in two, early and late in one, and late in five), all in the autologous pericardium group. Log-rank tests showed no significant difference in mortality (P = .892), LAVV reinterventions (P = .228), or LAVV regurgitation (P = .770). CONCLUSIONS: In AVSD, the VSD can safely be closed with either untreated autologous pericardium or xeno-pericardium. We found no difference in LAVV regurgitation or the need for reoperation between the two patches.

Mechanical Mitral Valve Replacement: A Multicenter Study of Outcomes With Use of 15- to 17-mm Prostheses.

BACKGROUND: The aim of this study was to evaluate early and mid-term outcomes (mortality and prosthetic valve reintervention) after mitral valve replacement with 15- to 17-mm mechanical prostheses. METHODS: A multicenter, retrospective cohort study was performed among patients who underwent mitral valve replacement with a 15- to 17-mm mechanical prosthesis at 6 congenital cardiac centers: 5 in The Netherlands and 1 in the United States. Baseline, operative, and follow-up data were evaluated. RESULTS: Mitral valve replacement was performed in 61 infants (15 mm, n = 17 [28%]; 16 mm, n = 18 [29%]; 17 mm, n = 26 [43%]), of whom 27 (47%) were admitted to the intensive care unit before surgery and 22 (39%) required ventilator support. Median age at surgery was 5.9 months (interquartile range [IQR] 3.2-17.4), and median weight was 5.7 kg (IQR, 4.5-8.8). There were 13 in-hospital deaths (21%) and 8 late deaths (17%, among 48 hospital survivors). Major adverse events occurred in 34 (56%). Median follow-up was 4.0 years (IQR, 0.4-12.5) First prosthetic valve replacement (n = 27 [44%]) occurred at a median of 3.7 years (IQR, 1.9-6.8). Prosthetic valve endocarditis was not reported, and there was no mortality related to prosthesis replacement. Other reinterventions included permanent pacemaker implantation (n = 9 [15%]), subaortic stenosis resection (n = 4 [7%]), aortic valve repair (n = 3 [5%], and aortic valve replacement (n = 6 [10%]). CONCLUSIONS: Mitral valve replacement with 15- to 17-mm mechanical prostheses is an important alternative to save critically ill neonates and infants in whom the mitral valve cannot be repaired. Prosthesis replacement for outgrowth can be carried out with low risk.

Atrioventricular Valve Function Predicts Reintervention in Complete Atrioventricular Septal Defect.

OBJECTIVE: Technical performance score (TPS) has been associated with both early and late outcomes across a wide range of congenital cardiac procedures. A previous study has shown that the presence of residual lesions before discharge, as measured by TPS, is accurately able to identify patients who required postdischarge reinterventions after complete atrioventricular septal defect (CAVSD) repair. The aim of this study is to determine which subcomponents of TPS best predict postdischarge reinterventions after CAVSD repair. METHODS: This was a single-center retrospective review of patients with CAVSD after repair between January 2000 and March 2016. We assigned TPS (class 1, no residua; class 2, minor residua; class 3, major residua or reintervention before discharge for residua) based on subcomponent scores from discharge echocardiograms. Outcome of interest was postdischarge reintervention. RESULTS: Among 344 patients, median age was 3.2 months (interquartile range [IQR], 2.4-4.2). There were 34 (10%) postdischarge reinterventions. Median follow-up was 2.6 years (IQR, 0.09-7.9). Trisomy 21 and concomitant procedure were associated with postdischarge reinterventions. After adjusting for these factors, among the subcomponents, left atrioventricular valve stenosis and regurgitation, right atrioventricular valve regurgitation, residual ventricular septal defect, and abnormal conduction at discharge were significantly associated with postdischarge reinterventions. CONCLUSIONS: We demonstrated the ability of TPS to predict postdischarge reinterventions in patients who underwent CAVSD repair. Residual left and right atrioventricular valve regurgitation and abnormal conduction at discharge were among the subcomponents strongly associated with postdischarge reinterventions. Thus, TPS may aid clinicians in identifying children at higher risk for reintervention.

Mitral Valve Replacement With the 15-mm Mechanical Valve: A 20-Year Multicenter Experience.

BACKGROUND: The aim of this study was to evaluate early and long-term outcomes (mortality and prosthetic valve replacement) after mitral valve replacement with the 15-mm St Jude Medical prosthesis (St Jude Medical, St Paul, MN). METHODS: A multicenter, retrospective cohort study was performed among patients who underwent mitral valve replacement with a 15-mm St Jude Medical Masters prosthesis at 4 congenital cardiac centers in The Netherlands. Operative results were evaluated and echocardiographic data studied at 0.5, 1, 2, 3, 5, and 10 years after surgery. RESULTS: Surgery was performed in 17 infants. Ten patients (59%) were treated in the intensive care unit before surgery; 8 (47%) were on ventilator support. Median age at surgery was 3.2 months (interquartile range [IQR], 1.2-5.6), and median weight was 5.2 kg (IQR 3.9-5.7). There was 1 early cardiac death and 1 late noncardiac death. Median follow-up time was 9.6 years (IQR, 2.4-13.2), including 8 patients with a follow-up more than 10 years. The first prosthetic valve explantation (n = 11) occurred at a median of 2.9 years (IQR, 2.0-5.4). Other reinterventions were permanent pacemaker implantation (n = 3), subaortic stenosis resection (n = 2), and paravalvular leak repair (n = 1). Prosthetic valve gradients increased from a mean of 5.0 mm Hg (at discharge) to a mean of 14.3 mm Hg (at 5-year follow-up). CONCLUSIONS: Mitral valve replacement with the 15-mm prosthesis can safely be performed in infants and even in neonates. Median freedom from prosthesis replacement for outgrowth is 3.5 years. Thromboembolic complications were rare.

Follow-up after biventricular repair of the hypoplastic left heart complex.

OBJECTIVES: In hypoplastic left heart complex patients, biventricular repair is preferred over staged-single ventricle palliation; however, there are too few studies to support either strategy. Therefore, we retrospectively characterized our patient cohort with hypoplastic left heart complex after biventricular repair to measure left-sided heart structures and assess our treatment strategy. METHODS: Patients with hypoplastic left heart complex who had biventricular repair between 2004 and 2018 were retrospectively reviewed. Operative results were evaluated and echocardiographic mitral valve (MV) and aortic valve (AoV) dimensions, left ventricular length and left ventricular internal diastolic diameter (LVIDd) were measured preoperatively and during follow-up after 0.5, 1, 3, 5 and 10 years. RESULTS: In 32 patients, the median age at surgery was 10 (interquartile range 5.0) days. The median follow-up was 6.19 (interquartile range 6.04) years. During the 10-year follow-up, the mean Z-scores increased from -2.82 to -1.49 and from -2.29 to 0.62 for MV and AoV, respectively. Analysis of variance results with post hoc paired t-tests showed that growth of left-sided heart structures was accelerated in the first year after repair, but was not equal, with the MV lagging behind the AoV (P = 0.033), resulting in significantly smaller MV Z-scores compared with AoV Z-scores at 10-year follow-up (P < 0.001). There were 2 (6%) early deaths. The major adverse events occurred in 4 (13%) patients. The surgical or catheter-based reintervention was required in 14 (44%) patients. CONCLUSIONS: The growth rate of heart structures was most prominent during the first year after biventricular repair with lower growth rate of the MV compared with the AoV.

Rates of Interventions in Isolated Coarctation Repair in Neonates Versus Infants: Does Age Matter?

BACKGROUND: In the current era, coarctation repair is usually performed as soon as diagnosis is established. We sought to determine if neonatal isolated coarctation repair had a higher rate of intervention postdischarge when compared with older infants. METHODS: We conducted a retrospective review of neonates (≤30 days of age) and infants (1 to 6 months of age) undergoing isolated coarctation repair between January 1, 2000, and March 31, 2016. Preoperative and postoperative Z scores of arch, aortic valve, and isthmus; rates of reintervention; and length of stay (LOS) were compared between groups. Linear or Cox regression was used to determine predictors of postoperative intensive care unit and hospital LOS during index surgery and postdischarge interventions for the entire cohort. RESULTS: There were 213 (71.5%) neonates and 85 (28.5%) infants. There was no difference in aortic valve morphology between groups. There was a trend but no statistical difference in postdischarge coarctation reintervention (neonates 10.3% versus infants 4.7%; p = 0.1) or left ventricular outflow tract, aortic valve, or mitral valve interventions (9.9% versus 9.4%; p = 0.9). Median postoperative intensive care LOS (3.01 versus 2.28 days; p < 0.001) and postoperative hospital LOS (6.23 versus 4.85 days; p < 0.001) were significantly higher in neonates. Median follow-up was 3 (interquartile range, 0.2 to 9) years for the entire cohort. On multivariable modeling, preoperative hypoplastic arch was associated with arch reinterventions, particularly in infants (10%; p = 0.003). Preoperative left-sided catheter intervention, left-sided obstructive lesions, and age predicted postdischarge intervention on left-sided structures. CONCLUSIONS: Coarctation repair can be safely performed in infants and neonates with acceptable postdischarge intervention. Severity of aortic arch hypoplasia is an important discriminator for reinterventions on the arch, particularly in infants.

Technical Performance Score: Predictor of Outcomes in Complete Atrioventricular Septal Defect Repair.

BACKGROUND: Technical performance score (TPS) has been associated with both early and late outcomes across a wide range of congenital cardiac procedures. We sought to validate TPS as predictor of outcomes for complete atrioventricular septal defect (CAVSD) repair. METHODS: This was a single-center retrospective review of patients after balanced CAVSD repair between January 1, 2000, and March 1, 2016. We assigned TPS (class 1, no residua; class 2, minor residua; class 3, major residua or reintervention before discharge for residua) based on summation of subcomponent scores from discharge echocardiograms. Outcomes of interest were in-hospital complications, postoperative days on ventilator, and postdischarge reintervention. RESULTS: Among 350 patients, median age was 3.2 months (interquartile range [IQR], 2.4 to 4.2 months). Fifty-four patients (16%) had class 1 TPS, 218 (62%) class 2, 63 (18%) class 3, and 15 (4%) were unscorable. There were 36 complications (10%), and median postoperative days on ventilator were 2 (IQR, 1 to 3) days. There were 34 postdischarge reinterventions (10%). Median follow-up was 2.6 years (IQR, 0.09 to 7.9) years. On multivariable modeling, class 3 TPS was associated with complications (odds ratio 5.45, 95% confidence interval [CI]: 1.06 to 28.1, p = 0.04), prolonged postoperative ventilator days (hazard ratio [HR] 0.54, 95% CI: 0.37 to 0.80, p = 0.002), and postdischarge reintervention (HR 5.61, 95% CI: 1.28 to 24.5, p = 0.02) after adjusting for covariates such as age, weight, genetic abnormality, concomitant procedure, prematurity, and second bypass run. CONCLUSIONS: At our center, CAVSD repair was associated with low morbidity. TPS may identify patients with complications, prolonged days on ventilator, and who require postdischarge reinterventions; thus, it provides feedback on areas of improvement and allows identification of patients who warrant closer follow-up.

Mid-term outcomes in unbalanced complete atrioventricular septal defect: role of biventricular conversion from single-ventricle palliation.

OBJECTIVES: Management strategy for unbalanced complete atrioventricular septal defects (CASVSDs) includes single-ventricle (SV) palliation and primary or staged biventricular (BiV) repair. More recently, BiV conversion (BiVC) from SV palliation and staged BiV recruitment (BiVR) have also been advocated. This study assesses mid-term outcomes in patients with unbalanced CASVSDs according to management strategy. METHODS: Consecutive patients with unbalanced CASVSDs who underwent surgery at a tertiary care centre from January 2000 to February 2016 with institutional review board approval. The index surgery was defined as the first palliation procedure for the SV group, a BiV repair for the BiV repair group and conversion or the first procedure for recruitment for the BiVC/BiVR group. Kaplan-Meier and Cox regression were used for time-to-event analysis of death/transplant and unplanned reinterventions that occurred after the index surgery. RESULTS: There were 212 patients: 82 (38.7%) had SV palliation, 67 (31.6%) had BiV repair and 63 (29.7%) had BiVC/BiVR, respectively; 50 patients had undergone a successful BiVC. There were 93 (43.9%) boys; 51 (24%) patients had Down syndrome; and 101 (48%) patients had heterotaxy. In the entire cohort, there were 40 (18.9%) deaths, 110 (51.9%) reinterventions, 82 (38.7%) surgical reinterventions and 70 (33%) catheter reinterventions, with some patients having more than 1 reintervention. Median length of follow-up was 35 (range 1-192) months. The BiVC/BiVR group had a transplant-free survival benefit similar to that of the primary BiV repair group compared with the SV group. The BiV repair group needed fewer catheter-based reinterventions compared with the SV and BiVC/BiVR groups. CONCLUSIONS: BiVC or BiVR from an SV pathway can be achieved with low rates of mortality and morbidity in patients with unbalanced CASVSDs.