After stage 1 palliation (S1P) with a Norwood operation, infants commonly experience growth failure during the initial interstage period. Growth failure during this high-risk period is associated ...with worse outcomes. This study evaluated the growth patterns of patients enrolled in the authors’ interstage home-monitoring program (HMP), which uses a multidisciplinary team approach to nutrition management. From 2000 to 2009, 148 infants were enrolled in the HMP after S1P. Families recorded daily weights during the interstage period and alerted the interstage monitoring team about protocol violations of nutritional goals. Interstage monitoring and inpatient data from the S1P hospitalization were reviewed to identify risk factors for poor growth. Growth outcomes were compared with published norms from the Centers for Disease Control. Interstage survival for patients in the HMP was 98 % (145/148). Growth velocity during the interstage period was 26 ± 8 g/day. The weight-for-age
z
-scores decreased from birth to discharge after S1P (−0.4 ± 0.9 to −1.3 ± 0.9;
p
< 0.001) but then increased during the interstage period to the time of S2P (−0.9 ± 1;
p
< 0.001). The factors associated with improved growth during the interstage period included male gender, greater birth weight, full oral feeding at S1P discharge, and a later birth era. After S1P, infants enrolled in an HMP experienced normal growth velocity during the interstage period. Daily observation of oxygen saturation, weight change, and enteral intake together with implementation of a multidisciplinary feeding protocol is associated with excellent interstage growth and survival.
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EMUNI, FIS, FZAB, GEOZS, GIS, IJS, IMTLJ, KILJ, KISLJ, MFDPS, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, SBMB, SBNM, UKNU, UL, UM, UPUK, VKSCE, ZAGLJ
Objective To determine whether clinicians could reliably predict health-related quality of life (HRQOL) for children with cardiac disease, the level of agreement in predicted HRQOL scores between ...clinician sub-types, and agreement between clinician-predicted HRQOL scores and patient and parent-proxy reported HRQOL scores. Study design In this multicenter, cross-sectional study, a random sample of clinical summaries of children with cardiac disease and related patient and parent-proxy reported HRQOL scores were extracted from the Pediatric Cardiac Quality of Life Inventory data registry. We asked clinicians to review each clinical summary and predict HRQOL. Results Experienced pediatric cardiac clinicians (n = 140), including intensive care physicians, outpatient cardiologists, and intensive care, outpatient, and advanced practice nurses, each predicted HRQOL for the same 21 pediatric cardiac patients. Reliability within clinician subspecialty groups for predicting HRQOL was poor (intraclass correlation coefficients, 0.34-0.38). Agreement between clinician groups was low (Pearson correlation coefficients, 0.10-0.29). When comparing the average clinician predicted HRQOL scores to those reported by patients and parent-proxies by Bland Altman plots, little systematic bias was present, but substantial variability existed. Proportional bias was found, in that clinicians tended to overestimate HRQOL for those patients and parent-proxies who reported lower HRQOL, and underestimate HRQOL for those reporting higher HRQOL. Conclusions Clinicians perform poorly when asked to predict HRQOL for children with cardiac disease. Clinicians should be cognizant of these data when providing counseling. Incorporating reported HRQOL into clinical assessment may help guide individualized treatment decision-making.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UL, UM, UPCLJ, UPUK
Neonates with hypoplastic left heart syndrome have impaired systemic oxygen delivery and also have a high risk of hypoxic ischemic brain injury with resultant neurodevelopmental impairment. We ...hypothesized that decreased postoperative oxygen delivery, as measured on the basis of systemic venous oxyhemoglobin saturation, would be related to persistent neurodevelopmental abnormality assessed in childhood.
Early perioperative hemodynamic data, prospectively acquired from neonates undergoing staged palliation of hypoplastic left heart syndrome by using deep hypothermic circulatory arrest with uniform perioperative management, were tested for relationship to later neurodevelopmental outcome assessed at age 4 years.
Complete hemodynamic and neurodevelopmental data were available in 13 patients aged 7 ± 8 days at the time of the Norwood procedure and aged 4.5 ± 0.7 years at follow-up assessment. The subjects scored significantly below the population mean for motor, visual-motor integration, and composite neurodevelopmental outcomes. The 5 (38%) patients with abnormal outcomes had significantly lower postoperative systemic venous oxygen saturation values than those with normal outcomes (46% ± 8% vs 56% ± 6%,
P = .024). Standard hemodynamic parameters did not differentiate patient outcomes. The risk of abnormal outcome increased with increasing time at a systemic venous oxygen saturation of less than 40% (
P < .001). A multivariate model of deep hypothermic circulatory arrest time, systemic venous oxygen saturation, blood pressure, and carbon dioxide tension accounted for 79% of the observed variance (
P < .001).
Decreased systemic oxygen delivery in the neonatal postoperative period is associated with hypoxic-ischemic brain injury and childhood neurodevelopmental abnormality. Measures of systemic oxygen delivery should be used to guide perioperative strategies to reduce the risk of hypoxic-ischemic brain injury.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
Background
Surgical complexity and related morbidities may affect long‐term patient quality of life (QOL). Aristotle Basic Complexity (ABC) score and Risk Adjustment in Congenital Heart Surgery ...(RACHS‐1) category stratify the complexity of pediatric cardiac operations. The purpose of this study was to examine the relationship between surgical complexity and QOL and to investigate other demographic and clinical variables that might explain variation in QOL in pediatric cardiac surgical survivors.
Methods and Results
Pediatric Cardiac Quality of Life (PCQLI) study participants who had undergone cardiac surgery were included. The PCQLI database provided sample characteristics and QOL scores. Surgical complexity was defined by the highest ABC raw score or RACHS‐1 category. Relationships among surgical complexity and demographic, clinical, and QOL variables were assessed using ordinary least squares regression. A total of 1416 patient–parent pairs were included. Although higher ABC scores and RACHS‐1 categories were associated with lower QOL scores (P<0.005), correlation with QOL scores was poor to fair (r=−0.10 to −0.29) for all groups. Ordinary least squares regression showed weak association with R2=0.06 to R2=0.28. After accounting for single‐ventricle anatomy, number of doctor visits, and time since last hospitalization, surgical complexity scores added no additional explanation to the variance in QOL scores.
Conclusions
ABC scores and RACHS‐1 categories are useful tools for morbidity and mortality predictions prior to cardiac surgery and quality of care initiatives but are minimally helpful in predicting a child's or adolescent's long‐term QOL scores. Further studies are warranted to determine other predictors of QOL variation.
Abstract Introduction This study examined the importance of self-perceptions as determinants of psychosocial adjustment reported by adolescents with heart disease and compared adolescents with heart ...disease to healthy norms. Methods Ninety-two adolescents with heart disease from a single Midwestern institution provided reports of self-perceptions (health, self-worth, competence, and importance), internalizing behavior problems (IPs; e.g., anxiety and depression) and externalizing behavior problems (EPs; e.g., attention problems and aggression), and health-related quality of life (HRQOL). Hierarchical linear regression was used to assess the impact of self-perceptions, as well as clinical factors (e.g., illness severity, time since last hospitalization, and medications) and demographic characteristics on outcomes. Results Self-perceptions explained the most variance in behavioral and HRQOL outcomes ( R2adj = 0.34 for IP, 0.24 for EP, and 0.33 for HRQOL, p < .001). Male gender and lower household income were associated with more behavior problems. Clinical variables were only related to HRQOL. Compared with healthy norms, IPs were significantly more common in male adolescents and HRQOL was lower ( p < .001). Discussion Adolescents with heart disease are at risk for internalizing behavior problems and reduced HRQOL; however, positive self-perceptions appear to be protective. Self-perceptions are critical and should be addressed by clinicians.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UL, UM, UPCLJ, UPUK
The optimal timing of second-stage palliation after Norwood operations remains undefined. Advantages of early cavopulmonary anastomosis are early elimination of volume load and shortening the ...high-risk interstage period. Potential disadvantages include severe cyanosis, prolonged pleural drainage and hospitalization, and excess mortality. We reviewed our recent experience to evaluate the safety of early cavopulmonary anastomosis.
Eighty-five consecutive patients undergoing post-Norwood operation cavopulmonary anastomosis were divided into group I (cavopulmonary anastomosis at <4 months; n = 33) and group II (cavopulmonary anastomosis at >4 months; n = 52). Groups were compared for age; size; early and late mortality; preoperative, initial postoperative, and discharge oxygen saturation; and duration of mechanical ventilation, intensive care unit stay, pleural drainage, and hospitalization.
Group I patients were younger than group II patients (94 +/- 21 days vs 165 +/- 44 days, respectively; P <.001) and smaller (4.8 +/- 0.8 kg vs 5.8 +/- 0.9 kg; P <.001). The preoperative oxygen saturation was not different (group I, 75% +/- 10%; group II, 78% +/- 8%; P =.142). The oxygen saturation was lower immediately after surgery in group I compared with group II (75% +/- 7% vs 81% +/- 7%, respectively; P <.001) but not by discharge (group I, 79% +/- 4%; group II, 80% +/- 4%). Younger patients were ventilated longer (62 +/- 86 hours vs 19 +/- 42 hours; P =.001), in the intensive care unit longer (130 +/- 111 hours vs 104 +/- 94 hours; P =.049), hospitalized longer (12.5 +/- 11.5 days vs 10.3 +/- 14.8 days; P =.012), and required longer pleural drainage (106 +/- 45 hours vs 104 +/- 93 hours; P =.046). Hospital survival was 100% in both groups. Actuarial survival to 12 months was 96% +/- 4% for group I and 96% +/- 3% for group II.
Early cavopulmonary anastomosis after the Norwood operation is safe. Younger patients are more cyanotic initially after surgery and have a longer duration of mechanical ventilation, pleural drainage, intensive care unit stay, and hospitalization.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
Background. Reduction in oxygen delivery can lead to organ dysfunction and death by cellular hypoxia, detectable by progressive (mixed) venous oxyhemoglobin desaturation until extraction is limited ...at the anaerobic threshold. We sought to determine the critical level of venous oxygen saturation to maintain aerobic metabolism in neonates after the Norwood procedure (NP) for the hypoplastic left heart syndrome (HLHS).
Methods. A prospective perioperative database was maintained for demographic, hemodynamic, and laboratory data. Invasive arterial and atrial pressures, arterial saturation, oximetric superior vena cava (SVC) saturation, and end-tidal CO
2 were continuously recorded and logged hourly for the first 48 postoperative hours. Arterial and venous blood gases and cooximetry were obtained at clinically appropriate intervals. SVC saturation was used as an approximation of mixed venous saturation (SvO
2). A standard base excess (BE) less than −4 mEq/L (BElo), or a change exceeding −2 mEq/L/h (ΔBElo), were used as indicators of anaerobic metabolism. The relationship between SvO
2 and BE was tested by analysis of variance and covariance for repeated measures; the binomial risk of BElo or ΔBElo at SvO
2 strata was tested by the likelihood ratio test and logistic regression, with cutoff at
p < 0.05.
Results. Complete data were available in 48 of 51 consecutive patients undergoing NP yielding 2,074 valid separate determinations. BE was strongly related to SvO
2 (model R
2 = 0.40,
p < 0.0001) with minimal change after adjustment for physiologic covariates. The risk of anaerobic metabolism was 4.8% overall, but rose to 29% when SvO
2 was 30% or below (
p < 0.0001). Survival was 100% at 1 week and 94% at hospital discharge.
Conclusions. Analysis of acid-base changes revealed an apparent anaerobic threshold when SvO
2 fell below 30%. Clinical management to maintain SvO
2 above this threshold yielded low mortality.
To examine whether perceived peer/parent norms or personal beliefs about adolescent substance use influence substance use among female adolescents with chronic medical conditions. Sixty-eight females ...reported on substance use, personal beliefs, and perceived peer/parent norms. Personal beliefs and perceived peer/parent norms were associated with adolescent’s current and future substance use. Although perceived peer norms accounted for variance in current substance use, only personal beliefs accounted for variance in future alcohol use. Targeting perceived peer norms may be effective for intervention efforts among adolescents endorsing current substance use, whereas alcohol use prevention efforts should target personal beliefs.
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NUK, OILJ, SAZU, UKNU, UL, UM, UPUK, VSZLJ
Neurodevelopmental outcomes after the Norwood procedure for single right ventricular lesions are worse than those in the normal population. It would be valuable to identify which patients at the time ...of Norwood discharge are at greatest risk for neurodevelopmental impairment later in childhood. As such, this study sought to construct and validate a model to predict poor neurodevelopmental outcome using variables readily available to the clinician. Using data from the 14 month neurodevelopmental outcome of the Single-Ventricle Reconstruction (SVR) trial, a classification and regression tree (CART) analysis model was developed to predict severe neurodevelopmental impairment, defined as a Psychomotor Development Index (PDI) score lower than 70 on the Bayley Scales of Infant Development-II. The model then was validated using data from subjects enrolled in the Infant Single Ventricle (ISV) trial. The PDI scores were lower than 70 for 138 (44 %) of 313 subjects. Predictors of a PDI lower than 70 were post-Norwood intensive care unit (ICU) stay longer than 46 days, genetic syndrome or other anomalies, birth weight less than 2.7 kg, additional cardiac surgical procedures, and use of five or more medications at hospital discharge. Using these risk factors, the CART model correctly identified 75 % of SVR subjects with a PDI lower than 70. When the CART model was applied to 70 subjects from the ISV trial, the correct classification rate was 67 %. This model of variables from the Norwood hospitalization can help to identify infants at risk for neurodevelopmental impairment. However, given the overall high prevalence of neurodevelopmental impairment and the fact that nearly one third of severely affected children would not have been identified by these risk factors, close surveillance and assessment for early intervention services are warranted for all infants after the Norwood procedure.
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EMUNI, FIS, FZAB, GEOZS, GIS, IJS, IMTLJ, KILJ, KISLJ, MFDPS, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, SBMB, SBNM, UKNU, UL, UM, UPUK, VKSCE, ZAGLJ
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