Pamela Donohue

A multicenter randomized, masked comparison trial of natural versus synthetic surfactant for the treatment of respiratory distress syndrome

OBJECTIVE To compare the efficacy and safety of two surfactant preparations in the treatment of respiratory distress syndrome (RDS). METHODS We conducted a randomized, masked comparison trial at 21 centers. Infants with RDS who were undergoing mechanical ventilation were eligible for treatment with two doses of either a synthetic (Exosurf) or natural (Infasurf) surfactant if the ratio of arterial to alveolar partial pressure of oxygen was less than or equal to 0.22. Crossover treatment was allowed within 96 hours of age if severe respiratory failure (defined as two consecutive arterial/alveolar oxygen tension ratios < or = 0.10) persisted after two doses of the randomly assigned surfactant. Four primary outcome measures of efficacy (the incidence of pulmonary air leak (< or = 7 days); the severity of RDS; the incidence of death from RDS; and the incidence of survival without bronchopulmonary dysplasia (BPD) at 28 days after birth) were compared by means of linear regression techniques. RESULTS The primary analysis of efficacy was performed in 1033 eligible infants and an analysis of safety outcomes in the 1126 infants who received study surfactant. Preentry demographic characteristics and respiratory status were similar for the two treatment groups, except for a small but significant difference in mean gestational age (0.5 week) that favored the infasurf treatment group. Pulmonary air leak (< or = 7 days) occurred in 21% of Exosurf- and 11% of infasurf-treated infants (adjusted relative risk, 0.53; 95% confidence interval, 0.40 to 0.71; p < or = 0.0001). During the 72 hours after the initial surfactant treatment, the average fraction of inspired oxygen (+/-SEM) was 0.47 +/- 0.01 for Exosurf- and 0.39 +/- 0.01 for infasurf-treated infants (difference, 0.08; 95% confidence interval, 0.06 to 0.10; p < 0.0001); the average mean airway pressure (+/-SEM) was 8.6 +/- 0.1 cm H2O; for Exosurf- and 7.2 +/- 0.1 cm H2O for Infasurf-treated infants (difference, 1.4 cm H2O; 95% confidence interval, 1.0 to 1.8 cm H2O; p < 0.0001). The incidences of RDS-related death, total respiratory death, death to discharge, and survival without bronchopulmonary dysplasia at 28 days after birth did not differ. The number of days of more than 30% inspired oxygen and of assisted ventilation, but not the duration of hospitalization, were significantly lower in Infasurf-treated infants. CONCLUSION Compared with Exosurf, Infasurf provided more effective therapy for RDS as assessed by significant reductions in the severity of respiratory disease and in the incidence of air leak complications.

This is a decision you have to make: using simulation to study prenatal counseling.

Introduction Prenatal decision making during extremely preterm labor is challenging for parents and physicians. Ethical and logistical concerns have limited empirical descriptions of physician counseling behaviors in this setting and constricted opportunities for communication training. This pilot study examines how simulation might be used to engage neonatologists in reflecting on their usual prenatal counseling behaviors. Methods Neonatology physicians counseled a couple (standardized patients) with the female patient having impending delivery at 23 3/7 weeks. Encounters were videotaped. Physicians completed postencounter surveys and debriefing interviews. Mixed-methods analysis explored the outcomes of clinical verisimilitude and counseling behaviors. Results All 10 neonatology physicians found that the simulation was highly realistic and that their behaviors paralleled neonatologist self-report in other studies. Physicians contributed more than 80% of encounter dialogue and mostly focused on biomedical information related to the acute perinatal period. Physicians spent nearly a quarter of each encounter in building relationships and expressing empathy. Most physicians initiated discussion about quality versus quantity of life but infrequently elicited the parents’ related goals and values. When medical factors and family preferences were held constant, physicians assumed variable responsibility for making decisions about resuscitation. Most physicians declined parent requests for treatment recommendations, although all of those physicians felt more than 75% certain about what should be done. Conclusions Simulation can reproduce the decisional context of prenatal counseling for extremely premature labor. These results have implications for communication training in any setting where physicians and patients without established relationships must discuss acute diagnoses and make high-stakes medical decisions.

Evaluating information prescriptions in two clinical environments

OBJECTIVE The research sought to evaluate whether providing personalized information services by libraries can improve satisfaction with information services for specific types of patients. METHODS Adult breast cancer (BrCa) clinic patients and mothers of inpatient neonatal intensive care unit (NICU) patients were randomized to receive routine information services (control) or an IRx intervention. RESULTS The BrCa trial randomized 211 patients and the NICU trial, 88 mothers. The BrCa trial showed no statistically significant differences in satisfaction ratings between the treatment and control groups. The IRx group in the NICU trial reported higher satisfaction than the control group regarding information received about diagnosis, treatments, respiratory tradeoffs, and medication tradeoffs. BrCa patients posed questions to librarians more frequently than did NICU mothers, and a higher percentage reported using the website. Questions asked of the librarians by BrCa patients were predominantly clinical and focused on the areas of treatment and side effects. CONCLUSIONS Study results provide some evidence to support further efforts to both implement information prescription projects in selected settings and to conduct additional research on the costs and benefits of services.

Convalescent care of infants in the neonatal intensive care unit in community hospitals: risk or benefit?

OBJECTIVE: To compare very low birth weight (VLBW) infants transported to a community hospital (CH) before discharge with infants who received convalescent care in a regional-referral NICU (RR-NICU) on 4 parameters: health indicators at the time of hospital discharge, health care use during the 4 months after discharge to home, parent satisfaction with hospital care, and cost of hospitalization. PATIENTS AND METHODS: VLBW infants cared for in 2 RR-NICUs during 2004–2006 were enrolled in the study. One RR-NICU transfers infants to a CH for convalescent care and the other discharges infants directly home. Infants were followed prospectively. Information was gathered from medical charts, parent interviews, and hospital business offices. RESULTS: A total of 255 VLBW infants were enrolled in the study, and 148 were transferred to 15 CHs. Nineteen percent of transferred infants were readmitted to a higher level of care before discharge from the hospital. Preventative health measures and screening examinations were more frequently missed, readmission within 2 weeks of discharge from the hospital was more frequent, parents were less satisfied with hospital care, and duration of hospitalization was 12 days longer, although not statistically different, if infants were transferred to a CH for convalescence rather than discharged from the RR-NICU. Total hospital charges did not differ significantly between the groups. CONCLUSION: Transfer of infants to a CH from an RR-NICU for convalescent care has become routine but may place infants at risk. Our study indicates room for improvement by both CHs and RR-NICUs in the care of transferred VLBW infants.

Parent Experience of Neonatal Encephalopathy: The Need for Family-Centered Outcomes

We aimed to characterize the parent experience of caring for an infant with neonatal encephalopathy. In this mixed-methods study, we performed semistructured interviews with parents whose infants were enrolled in an existing longitudinal cohort study of therapeutic hypothermia between 2011 and 2014. Thematic saturation was achieved after 20 interviews. Parent experience of caring for a child with neonatal encephalopathy was characterized by 3 principal themes. Theme 1: Many families described cumulative loss and grief throughout the perinatal crisis, critical neonatal course, and subsequent missed developmental milestones. Theme 2: Families experienced entangled infant and broader family interests. Theme 3: Parents evolved into and found meaning in their role as an advocate. These data offer insight into the lived experience of parenting an infant with neonatal encephalopathy. Primary data from parents can serve as a useful framework to guide the development and interpretation of parent-centered outcomes.

Enhancing Pediatric Palliative Care for Latino Children and Their Families: A Review of the Literature and Recommendations for Research and Practice in the United States

As the demand for pediatric palliative care (PC) increases, data suggest that Latino children are less likely to receive services than non-Latino children. Evidence on how to best provide PC to Latino children is sparse. We conducted a narrative review of literature related to PC for Latino children and their families in the United States. In the United States, Latinos face multiple barriers that affect their receipt of PC, including poverty, lack of access to health insurance, language barriers, discrimination, and cultural differences. Pediatric PC research and clinical initiatives that target the needs of Latino families are sparse, underfunded, but essential. Education of providers on Latino cultural values is necessary. Additionally, advocacy efforts with a focus on equitable care and policy reform are essential to improving the health of this vulnerable population.

Extrauterine Neuromaturation of Low Risk Preterm Infants

The objective of the study was to follow neuromaturation in preterm infants. From serial exams in 90 low risk very low birthweight infants, each infants Maturity Scores (the sum of tone, reflex, and response items) were plotted against postmenstrual age (PMA) when examined. Each infants estimated line of best fit provides two descriptors of that infants neuromaturation: slope (Individual Maturity Slope) and y-value (Predicted Maturity Score at 32-wk PMA). We found that Maturity Scores increased with PMA; 96% had correlation coefficients >0.8. Mean Actual and Predicted Maturity Scores at 32-wk PMA were 60 and 58, respectively, in 65 infants. When stratified by gestational age, Mean Actual Maturity Score at 30-wk PMA were 50 whether infants were 1 or several weeks old when examined. Therefore, low risk preterm infants demonstrated individual variability in rate of neuromaturation. Tone, reflexes, and responses nonetheless emerged in a predictable pattern, whether neuromaturation was intrauterine or extrauterine. This unique tool that measures preterm neuromaturation requires expertise but no technology. It has an exciting potential for providing insight into how emerging central nervous system function and structure influence each other, as well as how the central nervous system recovers from injury.