The epidemiology of atypical chronic lung disease in extremely low birth weight infants.

OBJECTIVE: To determine the incidence and associated complications of atypical chronic lung disease (ACLD) in extremely low birth weight infants. STUDY DESIGN: All infants born at Johns Hopkins Hospital between 1996 and 2001, with birthweight <1000 g, gestational age <31 weeks, no major anomalies or genetic syndromes, and living at least 21 days were eligible for inclusion. Data pertaining to demographics, hospital course, diagnosis of atypical chronic lung disease, patterns of surfactant use, complications of prematurity and severity of lung disease were collected. RESULT: Using inclusion criteria, 215 eligible infants were identified, of which 185 had hospital charts available for review. Twenty-eight infants (15%) met the criteria for atypical chronic lung disease. Of the remaining 157 infants, 57 patients met the criteria for mild bronchopulmonary dysplasia (BPD) (supplemental oxygen requirement at 28 days of life), 38 patients had moderate/severe BPD (supplemental oxygen requirement at both 28 days of life and 36 weeks post-menstrual age), and 38 infants did not have chronic lung disease. Infants with ACLD had much higher rates of sepsis (46%) and pneumothorax (18%) than infants in the comparison groups. CONCLUSION: Infants with respiratory distress syndrome in the first week of life, which initially resolves are still at risk for an atypical form of chronic lung disease. The prolonged respiratory support they require as a result of this type of lung disease increases their risk for complications of prematurity, which may outlast their lung disease. We speculate that inflammation secondary to infection acquired shortly after birth may be an important step in the pathogenesis of ACLD.

Earlier markers for cerebral palsy and clinical research in premature infants.

The diagnosis of cerebral palsy is based on evidence of impairment of the motor system, but symptoms become evident only as a premature infant matures. The diagnosis is made typically at 18 to 24 months of age, corrected for gestational age at birth. An earlier and more accurate way to identify infants destined to develop cerebral palsy may help improve the prognosis for this vulnerable population. For now, no antenatal, perinatal or postnatal test can predict cerebral palsy with a degree of certainty high enough to help providers or parents plan for an infant's future or make the best use of early intervention resources.

Communicating prognosis with parents of critically ill infants: direct observation of clinician behaviors.

OBJECTIVE: Delivering prognostic information to families requires clinicians to forecast an infant's illness course and future. We lack robust empirical data about how prognosis is shared and how that affects clinician-family concordance regarding infant outcomes. STUDY DESIGN: Prospective audiorecording of neonatal intensive care unit family conferences, immediately followed by parent/clinician surveys. Existing qualitative analysis frameworks were applied. RESULTS: We analyzed 19 conferences. Most prognostic discussion targeted predicted infant functional needs, for example, medications or feeding. There was little discussion of how infant prognosis would affect infant/family quality of life. Prognostic framing was typically optimistic. Most parents left the conference believing their infant's prognosis to be more optimistic than did clinicians. CONCLUSIONS: Clinician approach to prognostic disclosure in these audiotaped family conferences tended to be broad and optimistic, without detail regarding implications of infant health for infant/family quality of life. Families and clinicians left these conversations with little consensus about infant prognosis.

Withholding feeding during transfusion: Standardization of practice and nutritional outcomes in premature infants.

OBJECTIVE: To evaluate the nutritional impact of a feed-holding guideline during transfusion for infants <32 weeks gestation. STUDY DESIGN: A pre-/post-interventional study was conducted after introduction of a guideline to hold feeds during transfusion. Demographic variables in addition to nutritional outcomes were collected on all infants admitted within 48 hours of birth with gestational age <32 weeks. Data was collected during a 6 month period pre-intervention and the 6 month period post-intervention. RESULTS: There were 145 eligible infants. Mean birth weight and gestational age were similar in both periods. In total, 98 infants received transfusions, and 82 of those had an active feeding order prior to at least one transfusion. Total transfusions per infant and transfusions ordered while an infant had active feeding orders were similar in both periods. Time to full feedings was decreased post-intervention (p <  0.001). Weight at 34 weeks, incidence of second IV placement, additional IV fluid use, and hypoglycemia were similar between groups.Of 593 total transfusions, 207 were ordered while an infant had an active order for enteral nutrition. Pre-intervention, 64% of transfusions had feeds held during transfusion. Post-intervention, 87% of transfusions had feeds held during transfusion. Feeds were held more often (p <  0.001) and for a shorter duration (p = 0.005) in the post-intervention group. CONCLUSION: Implementing a guideline standardizing feeding practices during transfusions in premature infants increases standardization of care and results in decreased variability in practice. Adverse nutritional consequences were not found after the introduction of the routine practice of holding feedings during transfusion in preterm infants.

Discharging patients with prescriptions instead of medications: sequelae in a teaching hospital.

OBJECTIVE: This study measures the incidence of discrepancies among written prescriptions, medication regimens transcribed onto patient discharge instruction sheets (DCIs), and labels on medications dispensed by community pharmacies after discharge of patients from an academic medical center. METHODS: During a 2-month study period, we collected copies of prescriptions and DCIs. We also called care givers after discharge and asked them to read the medication labels that were filled from discharge prescriptions. Care givers were also asked whether they received instruction from community pharmacies. RESULTS: Data were collected on 335 prescriptions for 192 patients. Differences among the prescriptions, DCIs, and medication labels were found for 40 (12%) of the medications prescribed at discharge, representing 19% of the patients studied. Nineteen prescriptions had prescriber errors in dosing frequencies or dosage formulations. Three prescriptions were filled with different medication concentrations or strengths than requested. Prescriptions were altered by the community pharmacists for unexplained reasons in 6 cases, whereas the DCIs and original prescriptions differed in 12 cases. Only 44% of families were counseled about proper medication administration by their pharmacists. CONCLUSIONS: A potential for medication errors exists when pediatric patients are discharged with unfilled prescriptions. The potential may be worsened when discharge instructions are created from a prescription rather than from the label of a dispensed medication. Educational and risk-management efforts should emphasize the importance of writing complete, legible prescriptions and consulting appropriate reference materials to ensure that dose formulations and guidelines are accurate. Whenever possible, prescriptions should be filled before patients are discharged, so that the dispensed medications can be reviewed, and health care providers can provide accurate discharge instructions.

Assessing the need for transfusion of premature infants and role of hematocrit, clinical signs, and erythropoietin level.

There are no clear criteria for administration of blood to premature infants. In the past, indications for transfusion have included tachypnea, tachycardia, poor weight gain, apnea, bradycardia, pallor, lethargy, decreased activity, or poor feeding. Some have suggested that erythropoietin levels may also be useful in determining the need for transfusion. Data were studied from 11 premature infants with birth weights less than 1500 g collected throughout 469 hospital days. During that period the infants received a total of 37 blood transfusions. No overall relationship was found between hematocrit of 19% to 64% and heart rate, respiratory rate, or the occurrence of bradycardia; ie, these variables proved to be clinically unreliable as indicators of hematocrit. Furthermore, no predictable effect of transfusion could be identified on heart rate, respiratory rate, or on the incidence of apnea or bradycardia. It was anticipated that frequent episodes of apnea or bradycardia might increase serum erythropoietin concentration. To the contrary, more frequent bradycardia was associated with the low erythropoietin levels because those infants tended to receive transfusions for "symptomatic" anemia. The data are consistent with the concept that "anemia of prematurity" is not predictably associated with symptoms classically attributed to anemia. Possible reasons for this are that the premature infant has a different inherent response to anemia; that it is inappropriate to extrapolate symptoms of severe acute anemia to persons with mild or moderate chronic anemia; or, most likely, that other determinants of heart rate, respiratory rate, and apnea/bradycardia are of more importance than mild or moderate anemia.

Perceptions of the limit of viability: neonatologists' attitudes toward extremely preterm infants.

Although recent technologic advances have dramatically improved the survival of preterm infants, little information exists regarding the attitudes of neonatologists toward their smallest patients, infants born at the "limit of viability." In this pilot study we sent a single mailing of a 25-question survey designed to provide information about the medical treatment of extremely preterm infants (< 22 to 27 weeks' gestational age) to 3056 neonatologists practicing in the United States in September 1992. The 1131 (37%) respondents were well distributed geographically and by nature of practice (i.e., academic, academic affiliate, and community hospitals). Most of the respondents counseled parents that all infants < or = 22 weeks' gestational age die and that at least 75% of infants born at 23 weeks' gestation die. Only for infants born at > or = 26 weeks' gestational age did most of the neonatologists counsel parents that mortality is < or = 50%. Nonintervention or compassionate care in the delivery room was believed to be appropriate for infants less than 23 weeks' gestational age by virtually all neonatologists, by 52% of respondents for infants 23 weeks' gestational age, and by only 1% of respondents for infants 25 weeks' gestational age. Approximately two thirds of neonatologists considered parental wishes regarding resuscitation, and one quarter considered parental parity/fertility history in their medical decision making for infants born at 23 to 24 weeks' gestation. If an infant who had been previously resuscitated decompensated in spite of maximal medical treatment, most of the neonatologists were not willing to provide full resuscitation for infants born at any gestation less than 27 weeks. However, the number of neonatologists who would actively encourage withdrawal of support in a decompensating infant decreased markedly for infants born at > or equal 25 weeks' gestation. Neonatologists who responded to this survey in 1992 considered 23 to 24 weeks of gestation the limit of viability and had great concerns regarding medical decision making for these infants.

Impact of the perception of viability on resource allocation in the neonatal intensive care unit.

OBJECTIVE: To understand how neonatologists' perceptions of viability impact their willingness to recommend or provide medical interventions for infants born at 23 to 24 weeks' gestation. STUDY DESIGN: A 25-question survey mailed to 3056 neonatologists in the United States in 1992 yielded 1131 responses. Seven hundred seventy-five (775 of 1131, 69%) reported they believed that the lower limit of viability was 23 to 24 weeks' gestation. These respondents were asked if they were willing to recommend or provide a series of medical interventions for infants born at 23 and 24 weeks' gestation. RESULTS: Most respondents would provide ventilation (82% and 95%) and surfactant (62% and 78%) for infants born at 23 and 24 weeks' gestation, respectively. The respondent's prediction of <100% mortality, infant factors, and parental wishes were significant predictors of willingness to resuscitate infants born at 23 weeks' gestation. CONCLUSION: There is considerable variation among neonatologists in their willingness to recommend or provide medical interventions for infants born at 23 to 24 weeks' gestation.

Skin care management practices for premature infants.

OBJECTIVE: To describe current skin care practices for preterm infants in neonatal intensive care units in the United States. We hypothesized that there would be little consensus among facilities. STUDY DESIGN: Neonatal intensive care units (n = 823) listed in the 1996 United States Neonatologists Directory (American Academy of Pediatrics, Section on Perinatal Pediatrics) were sent a 28-question survey dealing with many aspects of neonatal skin care along with descriptive data about their neonatal intensive care unit. Descriptive data analysis was performed. RESULTS: A total of 305 surveys were returned (37% return rate); of these, 241 of the respondents reported admitting infants weighing < or = 1000 gm. Some neonatal skin care practices showed wide consensus (> 70%) (e.g., scrub procedure for staff; use of a skin barrier under tapes/adhesives), whereas other practices showed little consensus (< 30%) (e.g., routine surveillance cultures; use of Aquaphor). CONCLUSION: Consensus on skin care practices was not found among neonatal intensive care units. Data from this survey can be used to develop studies to examine whether certain skin care management practices can improve neonatal outcomes.

The impact of group B streptococcus prophylaxis on late-onset neonatal infections.

OBJECTIVE: To determine trends in late-onset neonatal infections and risk factors for ampicillin/penicillin-resistant microorganisms. STUDY DESIGN: Data on 584 infants with positive blood, urine or cerebrospinal fluid cultures for bacteria or fungi at 8-30 days of age from 1990 to 2007 were examined and divided into three epochs, based on intrapartum antibiotic prophylactic (IAP) practices. Pathogens and antibiotic resistance were compared among epochs. RESULT: The number of candidal infections increased over time for the entire population (P=0.006). There was an increased incidence of Gram-negative (P=0.009) and candidal infections (P=0.014) among very low-birthweight infants. Only Escherichia coli infections showed increasing ampicillin resistance over epochs (P=0.006). In regression analysis, ampicillin/penicillin resistance increased with IAP use (odds ratio 2.05). CONCLUSION: Changing microorganisms and increasing antibiotic resistance in late-onset neonatal infections are likely multifactorial but are increased with IAP use, which may identify an at-risk population. Increasing Candida infections require further investigation.

Mother-clinician discussions in the neonatal intensive care unit: agree to disagree?

OBJECTIVE: To compare mothers' and clinicians' understanding of an infant's illness and perceptions of discussion quality in the neonatal intensive care unit. STUDY DESIGN: English-speaking mothers with an infant admitted to the intensive care unit for at least 48 h were interviewed using a semi-structured survey. The clinician whom the mother had spoken to and identified was also surveyed. Interviews were audiotaped and transcribed. RESULT: A total of 101 mother-clinician pairs were interviewed. Most mothers (89%) and clinicians (92%) felt that their discussions had gone well. Almost all mothers could identify one of their infant's diagnoses (100%) and treatments (93.4%). Mothers and clinicians disagreed on infant illness severity 45% of the time. The majority of mothers (62.5%) who disagreed with clinician estimate of infant illness severity believed their infant to be less sick than indicated by the clinician. CONCLUSION: Mother-clinician satisfaction with communication does not ensure mother-clinician agreement about an infant's medical status.

The impact of group B Streptococcus prophylaxis on early onset neonatal infections.

OBJECTIVE: To determine if changes have occurred in the causative pathogens and/or antibiotic susceptibility profiles in early onset neonatal infections since initiation of group B Streptococcus (GBS) prophylaxis and to determine risk factors for ampicillin/penicillin resistant microorganisms. STUDY DESIGN: Data on 220 infants with positive blood, urine, or cerebrospinal fluid cultures for bacteria or fungi at ≤seven days of age from 1990-2007 were examined and divided into three epochs, based on intrapartum antibiotic prophylactic (IAP) practices. Pathogens and antibiotic resistance were compared among epochs. RESULTS: A significant decrease in the incidence of GBS infections occurred over time, with no change in the incidence of other pathogens or the emergence of antibiotic resistance, including the very low-birthweight population. In regression analysis, ampicillin resistance was associated with male gender (OR 3.096). CONCLUSIONS: No emergence of antibiotic resistant pathogens was found following IAP use. Changing microorganisms and increasing antibiotic resistance found in prior studies are likely multifactorial. Further study is needed to continue to reduce the rates of common early onset pathogens.

Health-related quality of life for infants in the neonatal intensive care unit.

When discussing the benefits and burdens of medical interventions for critically ill infants, clinicians and families are challenged to weigh the uncertainties of treatment success with infant pain and suffering. Concrete measures of infant suffering or quality of life, which could inform infant care and decision-making are lacking. Although consistent and reliable health-related quality of life (HRQOL) definitions and measures have been extensively developed for adults and older children, they have not been relevant to neonates or infants. Advancing HRQOL research methodology is an objective of Healthy People 2020. This paper will review the evidence and practices relevant to HRQOL with a focus on intensive care and pediatric settings. We will highlight existing HRQOL measures, which could be adapted for neonates and existing neonatal intensive care unit measures and practices, which could inform new measures of HRQOL.

Cardiovascular instability after patent ductus arteriosus ligation in preterm infants: the role of hydrocortisone.

OBJECTIVE: Following patent ductus arteriosus (PDA) ligation, preterm infants may develop profound hypotension and respiratory failure. Prophylactic stress hydrocortisone (HC) has emerged as a therapy to prevent complications, postulating these infants do not synthesize steroids because of an immature hypothalamic-pituitary-adrenal axis. The purpose of this study was to compare outcomes in infants who received stress HC before their PDA ligations to those who did not. STUDY DESIGN: A retrospective chart review was performed of infants who underwent PDA ligations at our institution's neonatal intensive care unit. Data were collected on treatment with HC, and respiratory and cardiovascular support. RESULT: Gestational age (GA) and birth weight were lower in the HC group (24 vs 25 weeks, 632 vs 790 g), but age at time of surgery was similar (26 vs 21 days). Cardiorespiratory support was comparable between the groups pre- and post-operatively. In regression models that adjusted for GA, HC treatment was not independently related to respiratory support postoperatively, but was associated with a decrease in postoperative dopamine (2.2 mcg kg(-1) min(-1); P=0.03). Respiratory support postoperatively was predicted by preoperative respiratory support. GA and age at surgery were not independently associated with outcome. CONCLUSION: Preoperative stress HC was not associated with improved cardiorespiratory stability, regardless of GA. Further investigation is needed to identify infants who may benefit from this therapy.

Adolescent mothers in the NICU: how much do they understand?

OBJECTIVE: We aimed to characterize adolescent parents' understanding of their infant's diagnosis, treatment and illness severity in the intensive care unit. STUDY DESIGN: Adolescent mothers were interviewed and neonatal medical records were reviewed. RESULT: Forty-two teens were interviewed. All had spoken with providers: 86% with nurses, 60% with physicians and 45% with both. Most teens could name their infant's diagnosis and treatment but often underestimated the illness severity. Teens reported reluctance to ask providers to clarify technical language. Those who said they spoke with a physician were less likely to understand their infant's illness severity than those who said they had not spoken with a physician (48 vs 82%). Parents' knowledge was better if physicians had documented explicit efforts to communicate with parents. CONCLUSION: Teens often underestimated the critical nature of their infant's illness. Future work should target adolescent willingness to ask questions and provider ability to accurately gauge parent knowledge.

Early cortisol values and long-term outcomes in extremely low birth weight infants.

OBJECTIVE: Both excess and insufficient levels of glucocorticoid in extremely low birth weight (ELBW) infants have been associated with adverse hospital outcomes, whereas excess glucocorticoid exposure has been associated with long-term adverse neurodevelopment. Our objective was to evaluate the relationship between neonatal cortisol concentrations and long-term outcomes of growth and neurodevelopment. STUDY DESIGN: As part of a multicenter randomized trial of hydrocortisone treatment for prophylaxis of relative adrenal insufficiency, cortisol concentrations were obtained at 12 to 48 h of postnatal age and at days 5 to 7 on 350 intubated ELBW infants, of whom 252 survived and returned for neurodevelopmental follow-up at 18 to 22 months corrected age. Cortisol values from each time point were divided into quartiles. Growth and neurodevelopmental outcome were compared for each quartile. RESULT: Median cortisol value was 16.0 microg per 100 ml at baseline for all infants, and 13.1 microg per 100 ml on days 5 to 7 in the placebo group. Outcomes did not differ in each quartile between treatment and placebo groups. Low cortisol values at baseline or at days 5 to 7 were not associated with impaired growth or neurodevelopment at 18 to 22 months corrected age. High cortisol values were associated with an increase in cerebral palsy, related to the increased incidence of severe intraventricular hemorrhage (IVH) and periventricular leukomalacia. CONCLUSION: Low cortisol concentrations were not predictive of adverse long-term outcomes. High cortisol concentrations, although predictive of short-term adverse outcomes such as IVH and periventricular leukomalacia, did not additionally predict adverse outcome. Further analysis into identifying factors that modulate cortisol concentrations shortly after birth could improve our ability to identify those infants who are most likely to benefit from treatment with hydrocortisone.

Parents' perception of the back-transport of very-low-birth-weight infants to community hospitals.

OBJECTIVE: To characterize parents' perception of back-transport of very-low-birth-weight (VLBW) infants from a regional referral neonatal intensive care unit (RR-NICU) to a community hospital (CH) for convalescent care. STUDY DESIGN: Mixed methods utilizing parental interview and medical record review. RESULT: Overall, 20% of parents selected the CH to which their child was transferred. Less than half of the parents wanted the transfer. Psychological comfort with the RR-NICU was the most frequently reported reason for opposing transfer. At the time of home discharge, most parents were satisfied with the transfer and felt prepared to care for their infant at home. CONCLUSION: Parents want their infants closer to home, but are worried about the unknown. They are willing to forfeit autonomy in decision-making regarding the site of convalescent care. Parents need better preparation for transfer. Including them in an advisory group that reviews transfer policies could ameliorate the transition.

The limit of viability--neonatal outcome of infants born at 22 to 25 weeks' gestation.

BACKGROUND: With improved survival of preterm infants, questions have been raised about the limit of viability. To provide better information and counseling for parents of infants about to be delivered after 22 to 25 weeks' gestation, we evaluated the mortality and neonatal morbidity of preterm infants born at these gestational ages. METHODS: We studied retrospectively all 142 infants born at 22 to 25 weeks' gestation (as judged by best obstetrical estimate) from May 1988 through September 1991 in a single hospital. Mortality in the first six months, including stillbirths, and neonatal morbidity (i.e., the presence of intracranial pathologic conditions, chronic lung disease, and retinopathy of prematurity) were analyzed. RESULTS: Fifty-six infants (39 percent) survived for six months. Survival improved with increasing gestational age; none of 29 infants born at 22 weeks' gestation survived, as compared with 6 of 40 (15 percent) born at 23 weeks, 19 of 34 (56 percent) born at 24 weeks, and 31 of 39 (79 percent) born at 25 weeks. There were seven stillbirths at 22 weeks' gestation and four stillbirths at 23 weeks. The more immature the infant, the higher the incidence of neonatal complications as determined by the number of days of mechanical ventilation, the length of the hospital stay, and the presence of retinopathy of prematurity, periventricular or intraventricular hemorrhage, or periventricular leukomalacia. Only 2 percent of infants born at 23 weeks' gestation survived without severe abnormalities on cranial ultrasonography, as compared with 21 percent of those born at 24 weeks and 69 percent of those born at 25 weeks. CONCLUSIONS: We believe that aggressive resuscitation of infants born at 25 weeks' gestation is indicated, but not of those born at 22 weeks. Whether the occasional child who is born at 23 or 24 weeks' gestation and does well justifies the considerable mortality and morbidity of the majority is a question that should be discussed by parents, health care providers, and society.