ABSTRACT
PURPOSE: Congenital diaphragmatic hernia (CDH) survivors experience increased risk of medical and neurodevelopmental challenges. This study describes the health-related quality of life (HRQOL), special education utilization and the family impact among neonatal CDH survivors. METHODS: A single-center prospective cohort of CDH survivors born between 1995 and 2006 was followed. Parents completed the PedsQL HRQOL index and a Family Impact survey to assess the need for medical equipment, home health services, and special education and quantify the burden placed on the family by their child's medical needs. RESULTS: Parents of 32 survivors participated at a mean survivor age of 8 ± 4 years. Many survivors utilized medical equipment (62%), home health services (18%) and special education (28%). CDH survivor HRQOL (79 ± 17) did not differ significantly from that of healthy children (83 ± 15, p = 0.12). HRQOL was diminished among survivors who required special education (67 ± 8 vs 82 ± 3; p = 0.04) and those reporting increased Family Impact score (p = 0.001). CONCLUSION: Many CDH survivors continue to require home medical equipment and home health services at school age. Most survivors have normal parent-reported HRQOL; however, the need for special education and higher family impact of neonatal CDH correlates with decreased HRQOL.
Subject(s)
Education, Special/methods , Health Status , Hernias, Diaphragmatic, Congenital/psychology , Parents/psychology , Quality of Life , Survivors/psychology , Adult , Female , Follow-Up Studies , Humans , Infant, Newborn , Male , Prospective Studies , Surveys and QuestionnairesABSTRACT
BACKGROUND/PURPOSE: Neonates with significant congenital diaphragmatic hernia (CDH) require cardiopulmonary support. Management has been characterized by progressive abandonment of hyperventilation. Ability to prognosticate outcomes using measures of ventilation and oxygenation with gentle ventilation remains unclear. We sought to determine whether assessment of gas exchange at the time of NICU admission is predictive of survival in this current era. METHODS: Neonates with CDH admitted to a Children's Hospital from 1995 to 2006 were evaluated for demographics, blood gas (ABG) measurements and ventilator settings for the first 48hours, and discharge outcome. RESULTS: One-hundred-and-nineteen CDH patients were admitted, 88 (74%) survived. Mean admission ABG pCO2 was higher in infants who died compared to survivors (86±48 versus 49±20, p≤0.001); positive predictive value (PPV) for mortality of pCO2≥80mmHg was 0.71. Mean first hour preductal oxygen saturation (preductalO2Sat) was lower in infants who died compared to survivors (81±17 versus 97±5, p<0.001); PPV for mortality of preductalO2Sat<85% was 0.82. Eleven patients met both pCO2 and preductalO2Sat criteria, and 10 (91%) died, PPV of 0.92. Within hours of admission, pCO2 and preductalO2Sat differences between survivors and nonsurvivors lost significance. CONCLUSION: Admission pCO2 and preductalO2Sat may be useful in predicting survival in neonatal CDH. The differential in gas exchange between survivors and nonsurvivors loses significance with contemporary neonatal care.
