Carol H. Leonard

Quality-of-Care Indicators for the Neurodevelopmental Follow-up of Very Low Birth Weight Children: Results of an Expert Panel Process

OBJECTIVE. To develop a set of quality indicators for the neurodevelopmental follow-up care of very low birth weight (VLBW; <1500 g) children. METHODS. We reviewed the scientific literature on predictors of neurodevelopmental outcomes for VLBW children and the clinical practice guidelines relevant to their care after hospital discharge. An expert panel with members nominated by the American Academy of Pediatrics, the National Institute of Child Health and Human Development, the Vermont Oxford Network, and the California Childrens Service was convened. We used a modified Delphi method to evaluate and select the quality-of-care indicators. RESULTS. The panel recommended a total of 70 indicators in 5 postdischarge follow-up areas: general care; physical health; vision, hearing, speech, and language; developmental and behavioral assessment; and psychosocial issues. Of these, 58 (83%) indicators were in preventive care, 5 (7%) were in acute care, and 7 (10%) were in chronic care. CONCLUSION. The quality indicators cover follow-up care for VLBW infants with various medical conditions. Given the elevated rates of long-term neurodevelopmental disabilities and the potential impact of poor health care, this new set of indicators provides an opportunity to assess and monitor the quality of follow-up care with the ultimate aim of improving the quality of care for this high-risk population.

Effect of medical and social risk factors on outcome of prematurity and very low birth weight

A cohort of 129 infants with birth weights less than or equal to 1250 gm was followed for more than 4 1/2 years (mean +/- SD: 60 +/- 10 months) to determine the independent effects of two medical risk factors--intracranial hemorrhage and severe chronic lung disease--and a parenting risk factor (abuse or neglect) on neurodevelopmental outcome. In infants without any intracranial hemorrhage or parenting risk factors, severe chronic lung disease was not related to neurologic or cognitive outcome. Infants with increasing grades of intracranial hemorrhage had increasing rates of neurologic and cognitive abnormalities. However, the factor associated with the highest incidence of later abnormality was the parenting risk factor. We conclude that infants with medical risk factors may have additional social risk factors, and that both of these influences must be considered in an examination of the long-term sequelae of neonatal complications.

School Age Outcome in Low Birth Weight Preterm Infants

Very low birth weight (VLBW) children at school age show variability in their outcome, compared with normal birth weight children, although many early physical and health differences are equalized by middle childhood. Studies of nonhandicapped VLBW children have found a higher rate of school retention and school problems in this population. Differences in intelligence have been reported, although these are often confounded by socioeconomic factors such as educational level of the parent. Few studies today of children born in the late 1970s and early 1980s have related school age outcome to central nervous system (CNS) status, yet for learning disabilities or other neuropsychological deficits, this may be highly relevant. Better understanding of medical risk factors, however, will not affect the decisive influence of social factors on their expression in the school age child.

Infants with Birth Weight 1,000-1,499 Grams Born in Three Time Periods: Has Outcome Changed Over Time?

The objective of this study was to see whether outcome of infants of larger birth weight (1,000-1,499 grams) has changed with advances in neonatology. The outcome of infants born in a recent time period (1989-1991) was compared with that of infants born previously, in 1984-1986 and 1979-1981. Univariate analyses were conducted on the association of medical risk factors and date of birth with outcome. More than 90% of infants in each time period were neurologically normal and more than 80% were cognitively normal. Predictor variables were intracranial hemorrhage for poor neurologic outcome and days on oxygen for poor cognitive outcome. We found that neurodevelopmental outcome was stable over three time periods.

Neurodevelopmental outcome after open fetal surgery

PURPOSE This study examined the neurological and age-appropriate developmental outcomes of 11 children who underwent open fetal surgery. RESULTS Nine children have normal neurological outcomes, and nine have normal development. CONCLUSION Intensive postnatal care, intracranial hemorrhage, and requirement for prolonged respiratory support were associated with a worse neurological and developmental prognosis.

Risk factors associated with infant death among very low birth weight infants after discharge from an intensive care nursery.

&NA; Low birth weight infants have an increased incidence of death after discharge from the intensive care nursery (ICN). To evaluate factors associated with death, and especially unexpected death, we conducted a study on 724 infants discharged from our ICN with a birth weight 1500 g or less. Twenty‐four infants died during the 1st year after discharge. Univariate analyses and logistic regression analyses were used to examine the effects of birth weight, gestational age, race, gender, growth retardation, chronic lung disease (CLD), intracranial hemorrhage (ICH), and socioeconomic risk on postdischarge death. Of the risk factors studied, only CLD (p = .001) and ICH (p = .004) were independently associated with death, but ICH alone was the most worrisome risk factor associated with sudden, unexpected death in low birth weight infants after discharge from an ICN.

1486 FOLLOW-UP OF HYPERVENTILATED NEONATES

Hyperventilation has been advocated for treatment of newborn infants with pulmonary hypertension; however, there are theoretical harmful effects of hyperventilation on the immature nervous system. From March 1977 to May 1979, 13 infants > 37 weeks gestation were selected to be hyperventilated because of severe hypoxemia refractory to conventional mechanical ventilation, i.e., failure to maintain PaO2 > 50 torr with an FiO2 1.0, despite PaCO2 <40 and pH >7.40. Eleven survived, 9 were available for follow-up evaluation. Seven infants had meconium aspiration syndrome, one had HMD, one had Gp B strep sepsis. All infants eventually required a decrease in PaCO2 to <20 torr and increase, in pH to >7.50 before a change in AaDO2 became evident. As a group, the 9 infants were exposed to a PaCO2<20 torr for 51.8±11.8 hrs (mean±SEM), to PaCO2 <15 torr for 11.8±3.3 hrs, to a pH 7.50 for 64.4±18.6 hrs, and to a pH>7.60 for 6.1±2.9 hrs. One infant was lost to follow-up after a normal assessment at 9 mos. The other 8 infants (7 AGA, 1 markedly SGA) were at least 1¼ years at the time of evaluation. The 7 AGA infants had a normal developmental quotient (mean±110, range 96-130) by Stanford Binet or Bayley; the one SGA infant had a Bayley of 89. All 8 had normal neurological examinations. All AGA infants are growing normally. Although only 9 infants with short term follow-up are reported here, these preliminary oservations are reassuring with respect to neurological and developmental outcome following prolonged hyperventilation.

Neurodevelopmental Outcome of Preterm Infants with an Abnormal Thyrotropin-Releasing Hormone (TRH) Stimulation Test at 28 Days of Life† 1319

Neurodevelopmental Outcome of Preterm Infants with an Abnormal Thyrotropin-Releasing Hormone (TRH) Stimulation Test at 28 Days of Life† 1319

Correlation of Neurologic Outcome with Head Ultrasound and Brain MRI in Full Term Infants Treated with ECMO 1193

Correlation of Neurologic Outcome with Head Ultrasound and Brain MRI in Full Term Infants Treated with ECMO 1193

DEVELOPMENTAL OUTCOME OF SURGICAL FETAL THERAPY FOR BIRTH DEFECTS. |[dagger]| 1635

Fetal intervention for infants with birth defects is a recent development in perinatal care. The Fetal Treatment Center at UCSF has performed fetal surgical interventions in cases of congenital cystic adenomatoid malformations(CCAM) and in cases of congenital diaphragmatic hernias (CDH). Twelve infants have survived. Four infants had CCAM; eight infants had Left CDH. We have been able to follow the outcome of seven infants (# 1-7) to date with formal evaluations (4 CCAM, 3 LCDH); and we have obtained information on five infants(#8-12) from primary care physicians: Table