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1.
J Pediatr ; 170: 166-72.e1, 2016 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-26685073

RESUMEN

OBJECTIVES: To assess self-reported quality of life (QOL) in a large multicenter cohort of adolescent and young adults surviving Fontan. STUDY DESIGN: Cross-sectional. The Pediatric Quality of Life Inventory (PedsQL) was administered to 408 survivors of Fontan ages 13-25 years enrolled in the Pediatric Heart Network Fontan Follow-up Study. Subjects also completed either the Child Health Questionnaire (age <19 years) or Short Form Health Survey (age ≥ 19 years). PedsQL data were compared with matched controls without a chronic health condition. Correlations between the measures were examined. RESULTS: Mean PedsQL scores for subjects receiving Fontan were significantly lower than those for the control group for physical and psychosocial QOL (P < .001). Overall, 45% of subjects receiving Fontan had scores in the clinically significant impaired range for physical QOL with 30% in the impaired range for psychosocial QOL. For each 1 year increase in age, the physical functioning score decreased by an average of 0.76 points (P = .004) and the emotional functioning score decreased by an average of 0.64 points (P = .03). Among subjects ≥19 years of age, the physical functioning score decreased by an average of 2 points for each year increase in age (P = .02). PedsQL scale scores were significantly correlated with conceptually related Child Health Questionnaire (P < .001) and Short Form Health Survey scores (P < .001). CONCLUSIONS: Survivors of Fontan are at risk for significantly impaired QOL which may decline with advancing age. Routine assessment of QOL is essential to inform interventions to improve health outcomes. The PedsQL allowed QOL assessment from pediatrics to young adulthood. TRIAL REGISTRATION: ClinicalTrials.gov: NCT00132782.


Asunto(s)
Procedimiento de Fontan/psicología , Calidad de Vida , Adolescente , Adulto , Factores de Edad , Estudios Transversales , Femenino , Estudios de Seguimiento , Humanos , Masculino , Encuestas y Cuestionarios , Sobrevivientes , Estados Unidos/epidemiología , Adulto Joven
2.
J Pediatr ; 168: 220-225.e1, 2016 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-26490132

RESUMEN

OBJECTIVE: To assess the variability in asymmetric growth and its association with neurodevelopment in infants with single ventricle (SV). STUDY DESIGN: We analyzed weight-for-age z-score minus head circumference-for-age z-score (HCAZ), relative head growth (cm/kg), along with individual growth variables in subjects prospectively enrolled in the Infant Single Ventricle Trial. Associations between growth indices and scores on the Psychomotor Developmental Index (PDI) and Mental Developmental Index (MDI) of the Bayley Scales of Infant Development-II (BSID-II) at 14 months were assessed. RESULTS: Of the 230 subjects enrolled in the Infant Single Ventricle trial, complete growth data and BSID-II scores were available in 168 (73%). Across the cohort, indices of asymmetric growth varied widely at enrollment and before superior cavopulmonary connection (SCPC) surgery. BSID-II scores were not associated with these asymmetry indices. In bivariate analyses, greater pre-SCPC HCAZ correlated with higher MDI (r = 0.21; P = .006) and PDI (r = 0.38; P < .001) and a greater HCAZ increase from enrollment to pre-SCPC with higher PDI (r = 0.15; P = .049). In multivariable modeling, pre-SCPC HCAZ was an independent predictor of PDI (P = .03), but not MDI. CONCLUSION: In infants with SV, growth asymmetry was not associated with neurodevelopment at 14 months, but pre-SCPC HCAZ was associated with PDI. Asymmetric growth, important in other high-risk infants, is not a brain-sparing adaptation in infants with SV. TRIAL REGISTRATION: Clinicaltrials.gov: NCT00113087.


Asunto(s)
Cefalometría , Trastornos del Crecimiento/etiología , Cardiopatías Congénitas/complicaciones , Ventrículos Cardíacos/anomalías , Trastornos del Neurodesarrollo/etiología , Inhibidores de la Enzima Convertidora de Angiotensina/uso terapéutico , Anomalías Cardiovasculares , Método Doble Ciego , Enalapril/uso terapéutico , Femenino , Cardiopatías Congénitas/tratamiento farmacológico , Humanos , Lactante , Recién Nacido , Masculino , Estudios Prospectivos
3.
J Pediatr ; 164(2): 237-42.e1, 2014 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-24210923

RESUMEN

OBJECTIVES: To assess variation in feeding practice at hospital discharge after the Norwood procedure, factors associated with tube feeding, and associations among site, feeding mode, and growth before stage II. STUDY DESIGN: From May 2005 to July 2008, 555 subjects from 15 centers were enrolled in the Pediatric Heart Network Single Ventricle Reconstruction Trial; 432 survivors with feeding data at hospital discharge after the Norwood procedure were analyzed. RESULTS: Demographic and clinical variables were compared among 4 feeding modes: oral only (n = 140), oral/tube (n = 195), nasogastric tube (N-tube) only (n = 40), and gastrostomy tube (G-tube) only (n = 57). There was significant variation in feeding mode among sites (oral only 0%-81% and G-tube only 0%-56%, P < .01). After adjusting for site, multivariable modeling showed G-tube feeding at discharge was associated with longer hospitalization, and N-tube feeding was associated with greater number of discharge medications (R(2) = 0.65, P < .01). After adjusting for site, mean pre-stage II weight-for-age z-score was significantly higher in the oral-only group (-1.4) vs the N-tube-only (-2.2) and G-tube-only (-2.1) groups (P = .04 and .02, respectively). CONCLUSIONS: Feeding mode at hospital discharge after the Norwood procedure varied among sites. Prolonged hospitalization and greater number of medications at the time of discharge were associated with tube feeding. Infants exclusively fed orally had a higher weight-for-age z score pre-stage II than those fed exclusively by tube. Exploring strategies to prevent morbidities and promote oral feeding in this highest risk population is warranted.


Asunto(s)
Nutrición Enteral/métodos , Gastrostomía/métodos , Síndrome del Corazón Izquierdo Hipoplásico/cirugía , Procedimientos de Norwood , Femenino , Estudios de Seguimiento , Humanos , Recién Nacido , Tiempo de Internación/tendencias , Masculino , Alta del Paciente/tendencias , Estudios Retrospectivos , Resultado del Tratamiento , Aumento de Peso
4.
J Pediatr ; 162(2): 250-6.e2, 2013 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-22939929

RESUMEN

OBJECTIVES: To describe neurodevelopmental outcomes in infants with single ventricle (SV) physiology and determine factors associated with worse outcomes. STUDY DESIGN: Neurodevelopmental outcomes for infants with SV enrolled in a multicenter drug trial were assessed at 14 months of age using the Bayley Scales of Infant Development-II. Multivariable regression analysis was used to identify factors associated with worse outcomes. RESULTS: Neurodevelopmental testing was performed at 14 ± 1 months in 170/185 subjects in the trial. Hypoplastic left heart syndrome was present in 59% and 75% had undergone the Norwood operation. Mean Psychomotor Developmental Index (PDI) and mental developmental index (MDI) were 80 ± 18 and 96 ± 14, respectively, (normal 100 ± 15, P < .001 for each). Group-based trajectory analysis provided a 2-group model ("high" and "low") for height z-score trajectory and brain type natriuretic peptide (BNP) trajectory. The predicted PDI scores were 15 points higher in the "high" height z-score trajectory compared with the "low" cluster (P < .001). A higher number of serious adverse events during the trial was associated with lower PDI scores (P = .02). The predicted MDI scores were 13-17 points lower in "low height trajectory-high BNP trajectory" group compared with the other 3 groups (P < .001). MDI scores were also lower in subjects who required extracorporeal membrane oxygenation during the neonatal hospitalization (P = .01) or supplemental oxygen at discharge (P = .01). CONCLUSIONS: Neurodevelopmental outcome at 14 months of age is impaired in infants with SV physiology. Low height trajectory and high BNP trajectory were associated with worse neurodevelopmental outcomes. Efforts to improve nutritional status alone may not improve neurodevelopmental outcomes.


Asunto(s)
Desarrollo Infantil , Discapacidades del Desarrollo/etiología , Discapacidades del Desarrollo/fisiopatología , Crecimiento , Ventrículos Cardíacos/anomalías , Discapacidades del Desarrollo/tratamiento farmacológico , Discapacidades del Desarrollo/epidemiología , Método Doble Ciego , Femenino , Humanos , Lactante , Masculino , Estudios Prospectivos , Resultado del Tratamiento
5.
J Pediatr ; 159(6): 1017-22.e2, 2011 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-21784436

RESUMEN

OBJECTIVES: To describe growth patterns in infants with single ventricle physiology and determine factors influencing growth. STUDY DESIGN: Data from 230 subjects enrolled in the Pediatric Heart Network Infant Single Ventricle Enalapril Trial were used to assess factors influencing change in weight-for-age z-score (z) from study enrollment (0.7 ± 0.4 months) to pre-superior cavopulmonary connection (SCPC; 5.1 ± 1.8 months, period 1) and pre-SCPC to final study visit (14.1 ± 0.9 months, period 2). Predictor variables included patient characteristics, feeding regimen, clinical center, and medical factors during neonatal (period 1) and SCPC hospitalizations (period 2). Univariate regression analysis was performed, followed by backward stepwise regression and bootstrapping reliability to inform a final multivariable model. RESULTS: Weights were available for 197 of 230 subjects for period 1 and 173 of 197 subjects for period 2. For period 1, greater gestational age, younger age at study enrollment, tube feeding at neonatal hospitalization discharge, and clinical center were associated with a greater negative z (poorer growth) in multivariable modeling (adjusted R(2) = 0.39, P < .001). For period 2, younger age at SCPC and greater daily caloric intake were associated with greater positive z (better growth; R(2) = 0.10, P = .002). CONCLUSIONS: Aggressive nutritional support and earlier SCPC are modifiable factors associated with a favorable change in weight-for-age z-score.


Asunto(s)
Trastornos del Crecimiento/etiología , Cardiopatías Congénitas/complicaciones , Inhibidores de la Enzima Convertidora de Angiotensina/uso terapéutico , Enalapril/uso terapéutico , Femenino , Humanos , Lactante , Recién Nacido , Masculino , Estudios Prospectivos
6.
Am Heart J ; 160(6): 1092-8, 1098.e1, 2010 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-21146663

RESUMEN

BACKGROUND: Abnormal height and adiposity are observed after the Fontan operation. These abnormalities may be associated with worse functional outcome. METHODS: We analyzed data from the National Heart, Lung, and Blood Institute Pediatric Heart Network cross-sectional study of Fontan patients. Groups were defined by height (z-score<-1.5 or≥-1.5) and body mass index (body mass index [BMI] z-score<-1.5 or -1.5 to 1.5 or≥1.5). Associations of anthropometric measures with measurements from clinical testing (exercise, echocardiography, magnetic resonance imaging) were determined adjusting for demographics, anatomy, and pre-Fontan status. Relationships between anthropometric measures and functional health status (FHS) were assessed using the Child Health Questionnaire. RESULTS: Mean age of the cohort (n=544) was 11.9±3.4 years. Lower height-z patients (n=124, 23%) were more likely to have pre-Fontan atrioventricular valve regurgitation (P=.029), as well as orthopedic and developmental problems (both P<.001). Lower height-z patients also had lower physical and psychosocial FHS summary scores (both P<.01). Higher BMI-z patients (n=45, 8%) and lower BMI-z patients (n=53, 10%) did not have worse FHS compared to midrange BMI-z patients (n=446, 82%). However, higher BMI-z patients had higher ventricular mass-to-volume ratio (P=.03) and lower % predicted maximum work (P=.004) compared to midrange and lower BMI-z patients. CONCLUSIONS: Abnormal anthropometry is common in Fontan patients. Shorter stature is associated with poorer FHS and non-cardiac problems. Increased adiposity is associated with more ventricular hypertrophy and poorer exercise performance, which may have significant long-term implications in this at-risk population.


Asunto(s)
Estatura , Peso Corporal , Procedimiento de Fontan/métodos , Cardiopatías Congénitas/cirugía , Hipertrofia Ventricular Izquierda/etiología , Sobrepeso/complicaciones , Niño , Estudios Transversales , Progresión de la Enfermedad , Femenino , Cardiopatías Congénitas/diagnóstico , Cardiopatías Congénitas/fisiopatología , Humanos , Hipertrofia Ventricular Izquierda/diagnóstico , Hipertrofia Ventricular Izquierda/fisiopatología , Imagen por Resonancia Magnética , Masculino , Sobrepeso/fisiopatología , Periodo Posoperatorio , Factores de Riesgo , Encuestas y Cuestionarios
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