Can Mozart Improve Weight Gain and Development of Feeding Skills in Premature Infants? A Randomized Trial.

OBJECTIVE: The study aimed to assess in a prospective randomized study the effect of Mozart's music on time to regain birth weight (BW) and development of oral feeding skills in babies born between 280/7 and 316/7 weeks of gestation. STUDY DESIGN: Healthy premature infants born between 280/7 and 316/7 completed weeks of gestation were randomized within 3 days of birth to either music or no music exposure. Infants in the music group were exposed to Mozart's double piano sonata twice per day for 14 days. The primary outcome was time to regain birth weight. The secondary outcome was development of oral feeding skills as evaluated by a speech/language pathologist blinded to the intervention. We hypothesized that exposure to Mozart's double piano sonata would decrease time to regain BW and improve feeding skills. A total of 32 newborns were needed to detect a 3-day difference in time to regain BW. RESULTS: Forty infants were enrolled and randomized. There were no significant differences between the two groups regarding the time to regain BW (p = 0.181) and the time to achievement of full oral feeds (p = 0.809). CONCLUSION: Exposure to Mozart's double piano sonata for 14 days after birth did not significantly improve time to regain BW or time to achieve full oral feedings in very premature infants. It is possible that Mozart's music has no effect or that the duration of music exposure was not sufficient to have a physiologic effect on growth and oral feeding skills. KEY POINTS: · Classical music improves the medical condition of adults.. · Music decreases neonatal resting energy expenditure.. · Music exposure did not significantly impact weight gain.. · This clinical relevance warrants further evaluation..

Change in neurodevelopmental outcomes for extremely premature infants over time: a systematic review and meta-analysis.

OBJECTIVE: Survival rates of extremely premature infants are rising, but changes in neurodevelopmental impairment (NDI) rates are unclear. Our objective was to perform a systematic review of intrainstitutional variability of NDI over time. DESIGN: Systematic review and meta-analysis. DATA SOURCES: Ovid MEDLINE, Embase, PubMed, Cochrane Library and Google Scholar. STUDY SELECTION: Study eligibility: (1) at least two discrete cohorts of infants born <27 weeks' gestation or <1000 g birth weight, (2) one cohort born after 1990 and at least one subsequent cohort of similar gestational age, (3) all cohorts cared for within the same Neonatal Intensive Care Unit(s) (NICU) and (4) neurodevelopmental outcomes at 18-36 months corrected age. MAIN OUTCOME: Change in NDI rates. Quality, validity and bias were assessed using Grading of Recommendations, Assessment, Development, and Evaluation and Quality in Prognosis Studies guidelines. RESULTS: Of 203 publications, 15 were eligible, including 13 229 infants. At the first time point, average NDI rate across study groups weighted by sample size was 41.0% (95% CI 34.0% to 48.0%). The average change in NDI between time points was -3.3% (95% CI -8·8% to 2.2%). For each added week of gestation at birth, the rate of NDI declined by 9.7% (95% CI 6.2% to 13.3%). Most studies exhibited moderate-severe bias in at least one domain, especially attrition rates. CONCLUSIONS: When comparing discrete same-centre cohorts over time, there was no significant change in NDI rates in infants born <27 weeks' gestation or <1000 g. Higher survival rates unaccompanied by improvement in neurodevelopment highlight urgency for renewed focus on the causes of NDI and evidence-based strategies to reduce brain injury.

Characterization of Spirituality in Parents of Very Preterm Infants in a Neonatal Intensive Care Unit.

OBJECTIVE: This study aimed to characterize the spiritual beliefs, practices, and needs of parents of very preterm infants, those born <32 weeks of gestation, in a level-III NICU and to characterize parental perception of the spiritual support received in the neonatal intensive care unit (NICU). STUDY DESIGN: Within 14 days of their infants' birth, parents underwent a recorded semistructured interview. Responses were organized into unique themes using standard qualitative methods. Parents completed the Spiritual Involvement and Beliefs Scale (SIBS) and Spiritual Needs Inventory (SNI). RESULTS: Twenty-six parents from 17 families were interviewed and provided SIBS and SNI surveys. Interviews yielded seven major themes describing parents' spirituality and support. Most parents identified themselves as spiritual (n = 14) or sometimes spiritual (n = 2). A high SIBS score was associated with Christian religion (p = 0.007) and non-White race (p = 0.02). The SNI showed ≥80% of parents reported a "frequent" or "always" need for laughter, being with family, thinking happy thoughts, and talking about day-to-day things. The most commonly mentioned sources of spiritual support were parents' connection with a higher power through their faith (n = 12) or religious activities (n = 8). Many parents reported receiving sufficient spiritual support outside of the hospital during their unique experience in the NICU. CONCLUSION: Parents of infants born <32 weeks of gestation in our NICU commonly self-identified themselves as spiritual. Many parents have similar spiritual needs which are often met by sources outside of the hospital. KEY POINTS: · Parents of infants born <32 weeks of gestation in our NICU commonly self-identify as spiritual.. · Many parents of preterm infants describe their spirituality as a personal experience.. · Many parents of preterm infants have similar spiritual needs.. · Many parents of preterm infants have their spiritual needs met outside of the hospital..

Parental protective factors and stress in NICU mothers and fathers.

OBJECTIVE: Evaluate the effect of parental protective factors on parental stress at time of NICU admission and prior to discharge. STUDY DESIGN: Parents of infants born at <35 weeks gestation were approached at a single level III NICU. Consenting parents completed a questionnaire on admission and prior to infant's discharge of demographic information and three validated instruments: (1) parental stress (PSS:NICU), (2) Parents' Assessment of Protective Factors (PAPF), and (3) health literacy (PHLAT-8). RESULTS: Mean PSS:NICU Total score was 2.8 ± 0.9 (Time 1) and 2.6 ± 1.1 (Time 2). Mean PAPF scores in all subcategories were high (means >3, ±0.3-0.5) (Time 1, Time 2). There was no clinically significant association between PSS:NICU scores and PAPF or any of the other measured variables. CONCLUSION: PAPF and other commonly implicated factors were not associated with perceived self-reported parental stress at time of NICU admission and prior to discharge.

Evaluating the Use of a Decision Aid for Parents Facing Extremely Premature Delivery: A Randomized Trial.

OBJECTIVE: To assess decisional conflict and knowledge about prematurity among mothers facing extreme premature delivery when the counseling clinicians were randomized to counsel using a validated decision aid compared with usual counseling. STUDY DESIGN: In this randomized trial, clinicians at 5 level III neonatal intensive care units in the US were randomized to supplement counseling using the decision aid or to counsel mothers in their usual manner. We enrolled mothers with threatened premature delivery at 220/7 to 256/7 weeks of gestation within 7 days of their counseling. The primary outcome was the Decisional Conflict Scale (DCS) score. One hundred mothers per group were enrolled to detect a clinically relevant effect size of 0.4 in the Decisional Conflict Scale. Secondary outcomes included knowledge about prematurity; scores on the Preparedness for Decision Making scale; and acceptability. RESULTS: Ninety-two clinicians were randomized and 316 mothers were counseled. Of these, 201 (64%) mothers were enrolled. The median gestational age was 24.1 weeks (IQR 23.7-24.9). In both groups, DCS scores were low (16.3 ± 18.2 vs 16.8 ± 17, P = .97) and Preparedness for Decision Making scores were high (73.4 ± 28.3 vs 70.5 ± 31.1, P = .33). There was a significantly greater knowledge score in the decision aid group (66.2 ± 18.5 vs 57.2 ± 18.8, P = .005). Most clinicians and parents found the decision aid useful. CONCLUSIONS: For parents facing extremely premature delivery, use of a decision aid did not impact maternal decisional conflict, but it significantly improved knowledge of complex information. A structured decision aid may improve comprehension of complex information. TRIAL REGISTRATION: Clinicaltrials.gov: NCT01713894.

Effect of Sustained Inflations vs Intermittent Positive Pressure Ventilation on Bronchopulmonary Dysplasia or Death Among Extremely Preterm Infants: The SAIL Randomized Clinical Trial.

Importance: Preterm infants must establish regular respirations at delivery. Sustained inflations may establish lung volume faster than short inflations. Objective: To determine whether a ventilation strategy including sustained inflations, compared with standard intermittent positive pressure ventilation, reduces bronchopulmonary dysplasia (BPD) or death at 36 weeks' postmenstrual age without harm in extremely preterm infants. Design, Setting, and Participants: Unmasked, randomized clinical trial (August 2014 to September 2017, with follow-up to February 15, 2018) conducted in 18 neonatal intensive care units in 9 countries. Preterm infants 23 to 26 weeks' gestational age requiring resuscitation with inadequate respiratory effort or bradycardia were enrolled. Planned enrollment was 600 infants. The trial was stopped after enrolling 426 infants, following a prespecified review of adverse outcomes. Interventions: The experimental intervention was up to 2 sustained inflations at maximal peak pressure of 25 cm H2O for 15 seconds using a T-piece and mask (n = 215); standard resuscitation was intermittent positive pressure ventilation (n = 211). Main Outcome and Measures: The primary outcome was the rate of BPD or death at 36 weeks' postmenstrual age. There were 27 prespecified secondary efficacy outcomes and 7 safety outcomes, including death at less than 48 hours. Results: Among 460 infants randomized (mean [SD] gestational age, 25.30 [0.97] weeks; 50.2% female), 426 infants (92.6%) completed the trial. In the sustained inflation group, 137 infants (63.7%) died or survived with BPD vs 125 infants (59.2%) in the standard resuscitation group (adjusted risk difference [aRD], 4.7% [95% CI, -3.8% to 13.1%]; P = .29). Death at less than 48 hours of age occurred in 16 infants (7.4%) in the sustained inflation group vs 3 infants (1.4%) in the standard resuscitation group (aRD, 5.6% [95% CI, 2.1% to 9.1%]; P = .002). Blinded adjudication detected an imbalance of rates of early death possibly attributable to resuscitation (sustained inflation: 11/16; standard resuscitation: 1/3). Of 27 secondary efficacy outcomes assessed by 36 weeks' postmenstrual age, 26 showed no significant difference between groups. Conclusions and Relevance: Among extremely preterm infants requiring resuscitation at birth, a ventilation strategy involving 2 sustained inflations, compared with standard intermittent positive pressure ventilation, did not reduce the risk of BPD or death at 36 weeks' postmenstrual age. These findings do not support the use of ventilation with sustained inflations among extremely preterm infants, although early termination of the trial limits definitive conclusions. Trial Registration: clinicaltrials.gov Identifier: NCT02139800.

Mindfulness Training among Parents with Preterm Neonates in the Neonatal Intensive Care Unit: A Pilot Study.

OBJECTIVE: To evaluate the feasibility of a mindfulness-based training session (MBTS) for parents of neonates born at ≤32 weeks' gestation in a level 3 neonatal intensive care unit (NICU). STUDY DESIGN: Within 14 days of admission, parents completed the Parental Stressor Scale: Neonatal Intensive Care Unit Questionnaire (PSS:NICU), Cognitive and Affective Mindfulness Scale (CAMS-R), and a survey on stress management techniques. Parents then participated in a MBTS with instruction in mindfulness-based practices and were asked to practice the techniques during the NICU stay. At discharge, parents repeated the surveys to evaluate their mindfulness-based practice experience. RESULTS: Of the 98 parents approached, 51 consented to participate (52%). Of these, 28 completed MBTS, initial, and discharge surveys. One parent had previously practiced mindfulness. The majority of parents (79%) reported that mindfulness practice was helpful, and 71% stated that they would continue their practice after NICU discharge. There was no difference in PSS:NICU or CAMS-R at discharge. CONCLUSION: An MBTS was feasible to provide to parents in our NICU. Parents practiced the mindfulness-based techniques and reported benefit from their mindfulness-based practice. Future studies are needed to evaluate if an MBTS is a valuable resource for NICU parents' coping.

Constructing a Culturally Informed Spanish Decision-Aid to Counsel Latino Parents Facing Imminent Extreme Premature Delivery.

Objective How Latino parents perceive and understand antenatal counseling for extreme prematurity, < 26 weeks of gestational age (GA), is not clear. We aim to characterize Latino parental perceptions of antenatal counseling in order to construct and validate a Spanish decision-aid (SDA) to improve parental knowledge of prematurity after antenatal consults. Methods This is a three-phased, prospective, multicenter study. First, interviews of 22 Latino parents with a history of birth < 26 weeks GA were conducted. Thematic analysis identified themes valued during antenatal counseling for decisions regarding neonatal resuscitation. Next, we incorporated these themes into the SDA. Finally, improvement in knowledge of prematurity in two Spanish-speaking groups, 'experienced' parents with a history of extremely premature birth and 'naïve' adult Latino volunteers, was measured using a multiple choice test before and after simulated counseling with the SDA. Result Twenty-two interviews generated seven unique themes. An SDA was constructed that preserved six themes paralleled by those found in a previously studied English population, and addressed a novel theme of "intercultural linguistic barriers" unique to our population. Knowledge scores rose in "naive" volunteers, 41 ± 12% to 71 ± 15% (P < 0.001), after simulated counseling with the SDA. 'Experienced' parents had a ceiling effect in knowledge scores, 62 ± 9% to 65 ± 11% (P = 0.22). The SDA was well received by participants. Conclusions for Practice Interviews of Latino parents with a history of premature birth generated similar themes to English-speaking parents, with intercultural linguistic barriers as a novel theme. An SDA for Latino parents facing extremely premature birth may improve comprehension of antenatal counseling.

Ethical implications of the use of decision aids for antenatal counseling at the limits of gestational viability.

Shared decision-making is a recent priority in neonatology. However, its implementation is at an early stage. Decision aids are tools designed to assist in shared decision-making. They help patients competently participate in making healthcare decisions. There are limited studies in neonatology on the formal use of decision aids as used in adult medicine. Decision aids are relatively new, even in adult medicine where they were pioneered; therefore, there is a lack of systematic oversight to their development and use. Despite evidence reporting a powerful effect on patients' decisions, decision aids are not subject to quality control, leading to potentially enormous ethical implications. These include: (i) possible introduction of developers' biases; (ii) use of outdated or incorrect information; (iii) misuse to steer a patient towards less expensive treatments; (iv) clinician liability if negative patient outcomes occur, since decision aids are currently not standard of care.

Characterization of Spirituality in Maternal-Child Caregivers.

OBJECTIVE: To characterize spiritual beliefs and support provided by maternal-child staff at three academic hospitals. BACKGROUND: Parents in neonatal intensive care units (NICUs) believe that addressing spirituality is important. The spiritual beliefs and the support provided by NICU staff are currently unknown. METHODS: This prospective study surveyed all maternal-child staff (NICU and Obstetrics): physicians, neonatal nurse practitioners, physician assistants, nurses, respiratory therapists, and social workers. Two validated tools were used: Spiritual Involvement and Beliefs Scale (SIBS) and Spiritual Care Inventory (SCI); SIBS assesses spiritual beliefs and practices, SCI assesses the perception of spiritual care that one provides. Demographic information, including self-identified religious affiliation, was collected. RESULTS: Respondents of 406 completed surveys were mostly nurses, female, white, and Christian. SIBS scores ranged between 21 and 136. Higher SIBS score was associated with Christian religion (p = 0.001) and African American (p = 0.003) and Asian (p = 0.017) race, when controlling for site, age, gender, education, role in the NICU, and years in practice. A high SCI score was also associated with Christian religion (p = 0.01). There was a trend toward an association between SCI and older age (p = 0.051). There was an association between a high SIBS score and higher ratings on both SCI subscales used. DISCUSSION: There is a wide range in spirituality and perceived spiritual support among maternal-child staff. This may coincide with the spiritual needs of families in the NICU.

Health Literacy Among Parents of Newborn Infants.

BACKGROUND: Health Literacy is the ability to obtain, process, and understand health information to make knowledgeable health decisions. PURPOSE: To determine baseline health literacy of neonatal intensive care unit (NICU) parents at a tertiary care hospital during periods of crucial information exchange. METHODS: Health literacy of English-speaking NICU parents was assessed using the Newest Vital Sign (NVS) on admission (n = 121) and discharge (n = 59). A quasi-control group of well-baby nursery (WBN) parents (n = 24) and prenatal obstetric clinic (PRE) parents (n = 18) were included. A single, Likert-style question measured nurses' assessment of parental comprehension with discharge teaching. Suspected limited health literacy (SLHL) was defined as the NVS score of 3 or less. FINDINGS/RESULTS: Forty-three percent of parents on NICU admission and 32% at NICU discharge had SLHL (P < .01). SLHL for WBN and PRE parents was 25% and 58%, respectively. Parental age, gender, location, and history of healthcare-related employment were not associated with health literacy status at any time point. Thirty-nine percent of NICU parents and 25% of WBN parents with SLHL at time of admission/infant birth had a college education. Nurse subjective measurement of parental comprehension of discharge instructions was not correlated to the objective measurement of health literacy (P = .26). IMPLICATIONS FOR PRACTICE: SLHL is common during peak time periods of complex health discussion in the NICU, WBN, and PRE settings. NICU providers may not accurately gauge parents' literacy status. IMPLICATIONS FOR RESEARCH: Methods for improving health communication are needed. Studies should evaluate SLHL in a larger NICU population and across different languages and cultures.

Parental and staff perspectives of NICU research procedures.

BACKGROUND: There are limited data on parental perception of infant participation in minimal risk and minor increase above minimal risk research focusing on the NICU population. The study objective was to assess parental and NICU staff perceptions concerning minimal risk and minor increase above minimal risk in the NICU setting. METHODS: Parents of infants and NICU staff were presented with a combination of 4 infant scenarios and 5 hypothetical research procedures. These assessed participants' willingness to allow their infant to participate in research and their attitude towards obligation to assist future children. Linear and hierarchal linear models analyzed the association and interaction effects on the likelihood to consent to research procedures. RESULTS: Sixty parents and 30 NICU staff members were surveyed. Parents' acceptability for each of the five research procedures ranged from 31 % to 83 %. Parent gender, age, race/ethnicity, insurance, education and history of previous child in the NICU were not associated with the likelihood to consent to the research procedures. Acceptability for each of the five research procedures among NICU staff ranged from 19 % to 98 %. There were no significant differences between NICU staff's and parents' responses for 4 of 5 research procedures. A minority of parents and nurses (38.3 % and 40 % respectively), compared to a majority of physicians (66.7 %), agreed or strongly agreed that parents have a responsibility to involve their children in low risk medical research in order to help future children, even if this would not help their own child. Lower agreement with obligation to help future children (p < 0.01) and higher education (p = 0.01) were associated with a decreased likelihood to consent to research procedures. CONCLUSION: In our study population, common NICU-related research procedures were considered appropriate and acceptable to a diverse group of NICU parents representing a wide range of race/ethnic and socioeconomic strata. Current regulations guiding informed consent for minimal and minor increase over minimal risk research in the NICU environment appear ethically consistent with a diverse group of parents and providers.

Guidelines for the Management of Extremely Premature Deliveries: A Systematic Review.

BACKGROUND AND OBJECTIVES: Available data on survival rates and outcomes of extremely low gestational age (GA) infants (22-25 weeks' gestation) display wide variation by country. Whether similar variation is found in statements by national professional bodies is unknown. The objectives were to perform a systematic review of management from scientific and professional organizations for delivery room care of extremely low GA infants. METHODS: We searched Embase, PubMed, and Google Scholar for management guidelines on perinatal care. Countries were included if rated by the United Nations Development Programme's Human Development Index as "very highly developed." The primary outcome was rating of recommendations from "comfort care" to "active care." Secondary outcomes were specifying country-specific survival and considering potential for 3 biases: limitations of GA assessment; bias from different definitions of stillbirths and live births; and bias from the use of different denominators to calculate survival. RESULTS: Of 47 highly developed countries, 34 guidelines from 23 countries and 4 international groups were identified. Of these, 3 did not state management recommendations. Of the remaining 31 guidelines, 21 (68%) supported comfort care at 22 weeks' gestation, and 20 (65%) supported active care at 25 weeks' gestation. Between 23 and 24 weeks' gestation, much greater variation was seen. Seventeen guidelines cited national survival rates. Few guidelines discussed potential biases: limitations in GA (n = 17); definition bias (n = 3); and denominator bias (n = 7). CONCLUSIONS: Although there is a wide variation in recommendations (especially between 23 and 24 weeks' GA), there is general agreement for comfort care at 22 weeks' GA and active care at 25 weeks' GA.

Complementary and Alternative Medicine use in women during pregnancy: do their healthcare providers know?

BACKGROUND: The National Institutes of Health reported in 2007 that approximately 38% of United States adults have used at least one type of Complementary and Alternative Medicine (CAM). There are no studies available that assess general CAM use in US pregnant women.The objectives of our study were to determine the prevalence and type of CAM use during pregnancy at one medical center; understand who is using CAM and why they are using it; and assess the state of patients' CAM use disclosure to their obstetrical providers. METHODS: A cross-sectional survey study of post-partum women was done to assess self-reported CAM use during pregnancy. Results of this survey were compared to results from a previous survey performed by this research team in 2006. Data were analyzed using binary logistic regression. RESULTS: In 2013, 153 women completed the survey, yielding a response rate of 74.3%. Seventy-two percent and 68.5% of participants reported CAM use during their pregnancies in 2006 and 2013 respectively. The percentage of participants who reported discussing CAM use with their obstetrical providers was less than 1% in 2006 and 50% in 2013. Increased use of different CAM therapies was associated with increased maternal age, primagravida, being US-born, and having a college education (p ≤ 0.05). However, these factors were poor predictors of CAM use. CONCLUSIONS: Given the frequency of CAM use and the difficulty in predicting who is using it, obstetrical providers should consider being informed about CAM and incorporating discussions about its use into routine patient assessments.

International survey of transfusion practices for extremely premature infants.

Our objective was to survey neonatologists regarding international practice of red cell transfusion thresholds for premature infants with <1000-g birth weight and/or <28-week gestation. An invitation to fill out an 11-question web-based survey was distributed to neonatologists through their professional societies in 22 countries. Physicians were asked about which specific factors, in addition to hemoglobin levels, influenced their decisions about transfusing premature infants. These factors included gestational age, postnatal age, oxygen need, respiratory support, reticulocyte count, and inotropic support. Physicians were presented with 5 scenarios and asked to identify hemoglobin cutoff values for transfusing infants with <1000-g birth weight and/or <28-week gestation. One thousand eighteen neonatologists responded: the majority were from the United States (67.5%), followed by Germany (10.7%), Japan (8.0%), the United Kingdom (4.9%), Spain (3.9%), Italy (2.6%), Colombia (0.6%), Argentina (0.4%), Canada (0.4%), Belgium (0.1%), and the Netherlands (0.1%). Half of the respondents (51.1%) reported having a written policy with specific red cell transfusion guidelines in their unit. Factors considered "very important" regarding the need to administer blood transfusions included degree of oxygen requirement (44.7%) and need for respiratory support (44.1%). Erythropoietin was routinely used to treat anemia by 26.0% of respondents. Delayed cord clamping or cord milking was practiced by 29.1% of respondents. The main finding was of a wide variation in the hemoglobin values used to transfuse infants, regardless of postnatal age. Step-wise increments in the median hemoglobin cutoffs directly paralleled an increase in the need for levels of respiratory support. In the first week of life, there was a wider range in the distribution of hemoglobin transfusion thresholds for infants requiring no respiratory support and full mechanical ventilation compared with the thresholds used in the second, third, and fourth weeks of life. An international survey using hypothetical scenarios shows that red blood cell transfusion practices vary widely among practicing neonatologists in participating countries.

Relationship between attrition and neurodevelopmental impairment rates in extremely preterm infants at 18 to 24 months: a systematic review.

OBJECTIVE: To assess the effect of loss to follow-up rates at 18 to 24 months on neurodevelopmental outcome statistics for infants of less than 1000 g birth weight or less than 28 weeks' gestational age. DATA SOURCES: MEDLINE, EMBASE, PubMed, and Cochrane Library databases (January 1, 2000, to June 30, 2010). STUDY SELECTION: We searched for studies reporting outcomes of infants of less than 1000 g birth weight or less than 28 weeks' gestational age who were born after 1990. MAIN EXPOSURE: Eligible articles had to report the primary outcome and follow-up rates at 18 to 24 months. MAIN OUTCOME: Our primary composite outcome of neurodevelopmental impairment (NDI) was any of a mental developmental quotient 2 SDs below the mean, using the Bayley Scales of Infant Development II; cerebral palsy; visual impairment; or significant hearing impairment. RESULTS: Of 43 publications describing outcomes at 18 to 24 months, 20 provided rates of follow-up, describing a total of 34,185 infants. The NDI rates ranged between 12.4% and 57.5%. Follow-up rates ranged between 71.6% and 100%. Higher rates of NDI were significantly correlated with greater loss to follow-up (r(2) = 0.38, P = .007). Higher rates of both NDI and loss to follow-up were seen in the United States compared with Canada, the United Kingdom, Finland, Denmark, Austria, Germany, and Australia (r(2) = 0.70, P = .001). CONCLUSIONS: Ascertainment bias may overestimate NDI in extremely low-birth-weight or extremely low-gestational-age survivors at 18 to 24 months. Alternatively, the characteristics of different populations and health systems may contribute to higher rates of attrition and higher rates of NDI.

Development and pretesting of a decision-aid to use when counseling parents facing imminent extreme premature delivery.

OBJECTIVE: To develop and pretest a decision-aid to help parents facing extreme premature delivery during antenatal counseling regarding delivery room resuscitation. STUDY DESIGN: Semistructured interviews with 31 clinicians and with 30 parents of children born <26 weeks' gestation were conducted following standard methods of qualitative research. These characterized perceptions of prenatal counseling to identify information that parents value when making decisions regarding delivery room resuscitation. These parental needs were formatted into a decision-aid. We assessed the primary outcome of how effectively the decision-aid improved knowledge during a simulated counseling session. Two groups of women were studied: parents with a history of prematurity ("experienced") and healthy women without prior knowledge of prematurity ("naïve"). RESULTS: Interviewees thought that visual formats to present survival and short- and long-term outcome information facilitated their own preparation, recall, and understanding. Accordingly, we designed a decision-aid as a set of cards with pictures and pictographs to show survival rates and complications. There was significant improvement in knowledge in 13 "experienced" parents (P = .04) and 11 "naïve" women (P < .0001). Participants found the cards useful and easy to understand. CONCLUSIONS: A decision-aid for parents facing extreme premature delivery may improve their understanding of complicated information during antenatal counseling.

Survival rates in extremely low birthweight infants depend on the denominator: avoiding potential for bias by specifying denominators.

OBJECTIVE: The objective of the study was to assess whether recent data reporting survival of preterm infants introduce a bias from the use of varying denominators. STUDY DESIGN: We performed a systematic review of hospital survival of infants less than 1000 g or less than 28 weeks. Included publications specified the denominator used to calculate survival rates. RESULTS: Of 111 eligible publications only 51 (46%) specified the denominators used to calculate survival rates: 6 used all births, 25 used live births, and 20 used neonatal intensive care unit admissions. Overall rates of survival to hospital discharge ranged widely: from 26.5% to 87.8%. Mean survival varied significantly by denominator: 45.0% (±11.6) using a denominator of all births, 60.7% (±13.2) using live births, or 71.6% (±12.1) using used neonatal intensive care unit admissions (P ≤ .009 or less for each of 3 comparisons). CONCLUSION: Variations in reported rates of survival to discharge for extremely low-birthweight (<1000 g) and extremely low-gestational-age (<28 weeks) infants reflect in part a denominator bias that dramatically affects reported data.