Growth and Neurodevelopmental Outcomes of Preterm Infants Born < 26 Weeks Gestation before and after Implementation of a Nutrition-Care Bundle.

BACKGROUND: This study aimed to assess the impact of a nutrition-care bundle on growth and neurodevelopmental outcomes of micro-preterm infants born in a level III neonatal intensive care unit (NICU) by two years corrected age. METHODS: A nutrition-care bundle emphasizing the prompt initiation of parenteral nutrition at birth, initiation of enteral feeds within 6 h after birth, and early addition of human milk fortifiers was implemented in 2015 for infants born < 26 weeks gestation. This before-and-after study evaluated growth and neurodevelopmental outcomes in infants born between 2012-2013 (before-nutrition-bundle, BNB) and 2016-2017 (after-nutrition-bundle, ANB). RESULTS: A total of 145 infants were included in the study. Infants in the ANB group (n = 73) were smaller (birthweight and gestational age), and there were more male infants and multiples included compared to the BNB group (n = 72). Enteral feeds and fortifiers started earlier in the ANB group. Growth velocity and weight z-score changes were similar in both groups during NICU stay and post-discharge. Systemic steroid use, but not cohort, was linked to lower Bayley scores across all domains. CONCLUSIONS: Implementing a nutrition-care bundle was not consistently associated with improved weight gain and neurodevelopmental outcomes in the micro-preterm infant population, possibly due to ongoing high-quality nutritional care by the clinical team.

How to measure patient and family important outcomes in extremely preterm infants: A scoping review.

AIM: Parents of children born preterm have identified outcomes to be measured for audit and research at 18-24 months of age: child well-being, quality of life/function, socio-emotional/behavioural outcomes, respiratory, feeding, sleeping, and caregiver mental health. The aim was to identify the best tools to measure these seven domains. METHODS: Seven working groups completed literature reviews and evaluated potential tools to measure these outcomes in children aged 18-24 months. A group of experts and parents voted on the preferred tools in a workshop and by questionnaire. Consensus was 80% agreement. RESULTS: Consensus was obtained for seven brief, inexpensive, parent friendly valid measures available in English or French for use in a minimum dataset and potential alternative measures for use in funded research. CONCLUSION: Valid questionnaires and tools to measure parent-identified outcomes in young preterm children exist. This study will facilitate research and collection of data important to families.

NICU Language, Everyday Ethics, and Giving Better News: Optimizing Discussions about Disability with Families.

The Neonatal Intensive Care Unit (NICU) has a language and culture that is its own. For professionals, it is a place of intense and constant attention to microdetails and cautious optimism. For parents, it is a foreign place with a new and unique language and culture. It is also the setting in which they are introduced to their child and parenthood for this child. This combination has been referred to as an emotional cauldron. The neonatal ethics literature mainly examines complex ethical dilemmas about withholding/drawing life sustaining interventions for fragile children. Rarely are everyday ethics or mundane ethics discussed. Microethics describe the mundane, discrete moments that occur between patients/families and clinicians. A key piece of these microethics is the language used to discuss patient care. Perception of prognoses, particularly around long-term neurodevelopmental outcome, is shaped with the language used. Despite this, clinicians in the NICU often have no specific training in the long-term neurodevelopment outcomes that they discuss. This paper focuses on the microethics of language used to discuss long-term neurodevelopmental outcomes, the developmental neuroscience behind language processing, and offers recommendations for more accurate and improved communication around long-term outcomes with families with critically ill neonates.

Understanding the Family Context: A Qualitative Descriptive Study of Parent and NICU Clinician Experiences and Perspectives.

Enabling individualized decision-making for patients requires an understanding of the family context (FC) by healthcare providers. The FC is everything that makes the family unique, from their names, preferred pronouns, family structure, cultural or religious beliefs, and family values. While there is an array of approaches for individual clinicians to incorporate the FC into practice, there is a paucity of literature guiding the process of collecting and integrating the FC into clinical care by multidisciplinary interprofessional teams. The purpose of this qualitative study is to explore the experience of families and Neonatal Intensive Care Unit (NICU) clinicians with information sharing around the FC. Our findings illustrate that there are parallel and overlapping experiences of sharing the FC for families and clinicians. Both groups describe the positive impact of sharing the FC on building and sustaining relationships and on personalization of care and personhood. The experience by families of revolving clinicians and the risks of miscommunication about the FC were noted as challenges to sharing the FC. Parents described the desire to control the narrative about their FC, while clinicians described seeking equal access to the FC to support the family in the best way possible related to their clinical role. Our study highlights how the quality of care is positively impacted by clinicians' appreciation of the FC and the complex relationship between a large multidisciplinary interprofessional team and the family in an intensive care unit, while also highlighting the difficulties in its practical application. Knowledge learned can be utilized to inform the development of processes to improve communication between families and clinicians.

Neonatal and Early Childhood Outcomes of Twin and Singleton Infants Born Preterm.

OBJECTIVE: To compare neonatal and early-childhood outcomes of twins and singletons born preterm and explore the association of chorionicity with outcomes. STUDY DESIGN: This was a national retrospective cohort study of singleton and twin infants admitted at 230/7-286/7 weeks to level III neonatal intensive care units in Canada (2010-2020). The primary neonatal outcome was a composite of neonatal death or severe neonatal morbidities. The primary early-childhood outcome was a composite of death or significant neurodevelopmental impairment. RESULTS: The study cohort included 3554 twin and 12 815 singleton infants. Twin infants born at 230/7-256/7 weeks had a greater risk of the composite neonatal outcome (adjusted risk ratio 1.04, 95% CI 1.01-1.07). However, these differences were limited to the subgroups of same-sex and monochorionic twin pregnancies. Twin infants of 230/7-256/7 weeks were also at an increased risk of the composite early-childhood outcome (adjusted risk ratio 1.22, 95% CI 1.09-1.37). Twin infants of 260/7-286/7 weeks were not at an increased risk of adverse neonatal outcomes or the composite early-childhood outcome compared with singleton infants. CONCLUSIONS: Among infants born at 230/7-256/7 weeks, twins have a greater risk of adverse neonatal outcomes and the composite early-childhood outcome than singleton infants. However, the increased risk of adverse neonatal outcomes is mostly limited to monochorionic twins and may thus be driven by complications related to monochorionic placentation.

Fragility and resilience: parental and family perspectives on the impacts of extreme prematurity.

OBJECTIVES: Extremely preterm babies have a significant risk of neurodevelopmental impairment (NDI). There has been little investigation regarding the impact of prematurity on families. The objective of this study was to explore parental perspectives regarding the impact of prematurity on themselves/their family. METHODS: Over 1 year, parents of children born <29 weeks' gestational age (GA) who were between 18 months old and 7 years old and came for their follow-up visit were invited to participate. They were asked to categorise the impacts of prematurity on their life and their family as positive, negative or both and to describe those impacts in their own words. Thematic analysis was performed by a multidisciplinary group, including parents. Logistic regression was performed to compare parental responses. RESULTS: Among parents (n=248, 98% participation rate), most (74%) reported that their child's prematurity had both positive and negative impacts on their life or their family's life, while 18% reported only positive impacts and 8% only negative impacts. These proportions were not correlated with GA, brain injury, nor level of NDI. The positive impacts reported included: an improved outlook on life, such as gratitude and perspective (48%), stronger family relationships (31%) and the gift of the child (28%). The negative themes were stress and fear (42%), loss of equilibrium due to medical fragility (35%) and concerns about developmental outcomes including the child's future (18%). CONCLUSION: Parents report both positive and negative impacts after an extremely preterm birth, independent of disability. These balanced perspectives should be included in neonatal research, clinical care and provider education.

Parental perspectives of outcomes following very preterm birth: Seeing the good, not just the bad.

AIM: To describe parental perspective on health and developmental outcomes of their preterm child in relation to level of neurodevelopmental impairment (NDI). METHODS: A parental survey about their children aged 15-36 months corrected age born ˂29 weeks' gestation investigated parental concerns and positive attributes. Parental responses in relation to their child's level of NDI were examined using Kruskal-Wallis and chi-square for trend tests. RESULTS: One hundred ninety-nine parental responses were obtained for 163 children, including 44% with NDI. Vast majority of parents reported their children were developing well with good physical health. All parents, irrespective of NDI, reported their children were happy and had a positive personality. Appreciation of social interactions was higher for parents of children without versus with NDI (96% vs. 87%, p = 0.039). Parents of children with NDI were more likely to express concerns than those without NDI. Overall, development was the most common area of concern (45%), followed by the child's future (40%) and physical health (35%). CONCLUSION: Parents of preterm children report many positive points and concerns, some of which are not examined in neonatal follow-up data. These parental perspectives could be used to inform parents of preterm infants, both antenatally and in the neonatal unit.

A systematic review of paediatric neurogenic lower urinary tract dysfunction guidelines using the Appraisal of Guidelines and Research Evaluation (AGREE) II instrument.

OBJECTIVE: To examine and critique current international clinical practice guidelines (CPGs) on management of paediatric neurogenic lower urinary tract dysfunction (NLUTD) and assess the applicability of these guidelines to clinical practice. MATERIALS AND METHODS: We conducted a systematic review of all CPGs on NLUTD published in English from the year 2010 to 2022. Six reviewers independently used the Appraisal of Guidelines and Research Evaluation (AGREE) II instrument to appraise all eligible CPGs. This instrument is comprised of 23 items organised into six quality domains. The scores for each item and domain were tabulated for each reviewer and interrater reliability was assessed for each domain using the intraclass correlation coefficient (ICC). RESULTS: Six CPGs were appraised and these included: National Institute for Health and Care Excellence (NICE), European Society for Paediatric Urology, International Children's Continence Society, Irish, Spina Bifida Association (SBA), and International Brazilian Journal of Urology guidelines. They had high mean standardised scores in the domain on 'scope and purpose' and 'clarity of presentation' but had low scores in the domain of 'applicability'. The top three CPGs based on overall score were the NICE, Irish and SBA guidelines and the reviewers had high degree of interrater reliability (ICC 0.912, P < 0.001). The mean scores in various domains for the top three guidelines were 95.8 (scope and purpose), 87.5 (stakeholder involvement), 69.1 (rigour of development), 94.0 (clarity of presentation), 68.4 (applicability), and 59.7 (editorial independence). The diagnostic and treatment recommendations of the top three guidelines were presented. CONCLUSION: The existing CPGs on paediatric NLUTD provide high-quality evidence based recommendations. The NICE, Irish and SBA guidelines were the top three CPGs identified. They scored high on most domains except applicability and editorial independence. These domains need to be considered for future updates to improve the utility.

Timing of Systemic Steroids and Neurodevelopmental Outcomes in Infants < 29 Weeks Gestation

Objective: To determine the association between postnatal age (PNA) at first administration of systemic postnatal steroids (sPNS) for bronchopulmonary dysplasia (BPD) and mortality or significant neurodevelopmental impairment (sNDI) at 18−24 months corrected age (CA) in infants < 29 weeks' gestation. Methods: Data from the Canadian Neonatal Network and Canadian Neonatal Follow-up Network databases were used to conduct this retrospective cohort study. Infants exposed to sPNS for BPD after the 1st week of age were included and categorized into 8 groups based on the postnatal week of the exposure. The primary outcome was a composite of mortality or sNDI. A multivariable logistic regression model adjusting for potential confounders was used to determine the association between the sPNS and ND outcomes. Results: Of the 10,448 eligible infants, follow-up data were available for 6200 (59.3%) infants. The proportion of infants at first sPNS administration was: 8%, 17.5%, 23.1%, 18.7%, 12.6%, 8.3%, 5.8%, and 6% in the 2nd, 3rd, 4th, 5th, 6th, 7th, 8−9th, and ≥10th week of PNA respectively. No significant association between the timing of sPNS administration and the composite outcome of mortality or sNDI was observed. The odds of sNDI and Bayley-III motor composite < 70 increased by 1.5% (95% CI 0.4, 2.9%) and 2.6% (95% CI 0.9, 4.4%), respectively, with each one-week delay in the age of initiation of sPNS. Conclusions: No significant association was observed between the composite outcome of mortality or sNDI and PNA of sPNS. Among survivors, each week's delay in initiation of sPNS may increase the odds of sNDI and motor delay.

Le suivi de l'extrême prématuré après le congé des soins intensifs néonatals.

La survie des extrêmes prématurés (moins de 28 semaines d'âge gestationnel) s'est améliorée au fil du temps. Bon nombre s'en sortent bien et ont une bonne qualité de vie. Ils demeurent toutefois vulnérables à des problèmes de santé, y compris des difficultés neurosensorielles et neurodéveloppementales, que les médecins de première ligne, les pédiatres et les cliniques spécialisées doivent surveiller. Le présent document de principes passe en revue les conséquences médicales et neurodéveloppementales potentielles pour les extrêmes prématurés dans les deux ans suivant leur congé et fournit des stratégies de counseling, de dépistage précoce et d'intervention. Parce qu'ils sont tous liés à l'extrême prématurité, la dysplasie bronchopulmonaire ou les troubles respiratoires, les problèmes d'alimentation et de croissance, le développement neurosensoriel (vision et audition), la paralysie cérébrale et le trouble du spectre de l'autisme doivent faire rapidement l'objet d'une évaluation. Pour évaluer la croissance et le développement, il faut corriger l'âge chronologique en fonction de l'âge gestationnel jusqu'à 36 mois de vie. Par ailleurs, l'attention au bien-être émotionnel des parents et des proches fait partie intégrante des soins de qualité de l'extrême prématuré.

Follow-up care of the extremely preterm infant after discharge from the neonatal intensive care unit.

The survival of babies born extremely preterm (EP, <28 weeks gestation) has improved over time, and many have good outcomes and quality of life. They remain at risk for health issues, including neurosensory and neurodevelopmental difficulties requiring monitoring by primary physicians, paediatricians, and specialty clinics. This statement reviews potential medical and neurodevelopmental consequences for EP infants in the first 2 years after discharge and provides strategies for counselling, early detection, and intervention. EP-related conditions to assess for early include bronchopulmonary dysplasia or respiratory morbidity, feeding and growth concerns, neurosensory development (vision and hearing), cerebral palsy, and autism spectrum disorder. Correction for gestational age should be used for growth and development until 36 months of age. Integral to quality care of the child born EP is attention to the emotional well-being of parents and caregivers.

What factors are important to whom in what context, when adults are prescribed hearing aids for hearing loss? A realist review protocol.

INTRODUCTION: Hearing aids are the gold standard treatment to help manage hearing loss. However, not everyone who needs them has them, and of those who do, a significant proportion of people do not use them at all, or use them infrequently. Despite literature reviews listing key barriers and enablers to the uptake and use of hearing aids, there is little evidence to describe how this varies by population and context. This review will describe what factors are important to whom in what context when considering the provision of hearing aids for hearing loss in adults. METHODS AND ANALYSIS: The aims of this review are as follows: (1) To iteratively review and synthesise evidence surrounding the provision of hearing aids for hearing loss in adults. (2) To generate a theory-driven understanding of factors that are important, for whom, and in what context. (3) To develop a programme theory describing contexts that can support the provision of hearing aids to result in improved outcomes for adults with hearing loss. A scoping literature search will aid the development of programme theories, to explain how the intervention is expect to work, for whom, in what circumstances and in which contexts. We will locate evidence in the following databases: CINAHL, Cochrane Library, EMBASE, MEDLINE, PsycINFO, PubMED, Web of Science with no date restrictions. A realist analytic approach will be used to refute and refine these initial programme theories. Throughout the review, relevant key stakeholders (eg, patients and clinicians) will be consulted to test and refine the programme theories. ETHICS AND DISSEMINATION: This study was approved by the University of Nottingham Faculty of Medicine and Health Sciences Research Ethics Committee: (FMHS 95-0820) and the London Brent NHS Research Ethics Committee (Ref: 21/PR/0259). The review will be reported according to the RAMESES guidelines and published in a peer-reviewed journal. PROSPERO REGISTRATION NUMBER: CRD42021282049.

Automated Movement Analysis to Predict Cerebral Palsy in Very Preterm Infants: An Ambispective Cohort Study.

The General Movements Assessment requires extensive training. As an alternative, a novel automated movement analysis was developed and validated in preterm infants. Infants < 31 weeks' gestational age or birthweight ≤ 1500 g evaluated at 3−5 months using the general movements assessment were included in this ambispective cohort study. The C-statistic, sensitivity, specificity, positive predictive value, and negative predictive value were calculated for a predictive model. A total of 252 participants were included. The median gestational age and birthweight were 274/7 weeks (range 256/7−292/7 weeks) and 960 g (range 769−1215 g), respectively. There were 29 cases of cerebral palsy (11.5%) at 18−24 months, the majority of which (n = 22) were from the retrospective cohort. Mean velocity in the vertical direction, median, standard deviation, and minimum quantity of motion constituted the multivariable model used to predict cerebral palsy. Sensitivity, specificity, positive, and negative predictive values were 55%, 80%, 26%, and 93%, respectively. C-statistic indicated good fit (C = 0.74). A cluster of four variables describing quantity of motion and variability of motion was able to predict cerebral palsy with high specificity and negative predictive value. This technology may be useful for screening purposes in very preterm infants; although, the technology likely requires further validation in preterm and high-risk term populations.

The STEP Program-A Qualitative Study of the Supportive Therapeutic Excursion Program and Its Effect on Enabling Parental Self-Efficacy and Connectedness after the Stress-Experience of the NICU.

As a child is born, so are the parents with new roles assumed. Attachment is secured, and parents quickly become the experts in their child. With preterm birth, however, this quiet and essential period of discovery is interrupted. It is described as a traumatic and stressful experience. Programs that aim to address this focus on education and support. This qualitative study explores the effect on parents and staff of a novel and simple intervention of parents walking their baby in a stroller (Supportive Therapeutic Excursion Program, STEP). This study used a qualitative methodology that included 20 semi-structured interviews for content saturation to explore the experiences of parents and staff participating in the STEP program. We found an overall positive experience reported by both parents and nursing staff with STEP. Analysis revealed that as autonomy is fostered with parent education around transition to home, STEP brought a normalcy that was reported to bolster participating parents' self-efficacy and connectedness, two important elements for recovery from stressful situations. The potential impact of STEP can be far reaching because, although future research is needed, these data suggest that inexpensive programs that promote normalcy may enable self-efficacy and connectedness prior to hospital discharge.

Association of inotrope use with neurodevelopmental outcomes in infants <29 weeks gestation: a retrospective cohort study.

OBJECTIVE: The primary objective was to compare neurodevelopmental (ND) outcomes at 18-24 months in preterm infants <29 weeks gestational age (GA) who received versus those who did not receive inotropes in the first week of life. The secondary objective was to assess ND outcomes according to the duration of inotropic support in the first week of life (≤3 or >3 days). STUDY DESIGN: Retrospective population-based cohort study of preterm infants <29 weeks GA admitted to participating neonatal intensive care units (NICUs) of the Canadian Neonatal Network (CNN) from January 2010 to September 2011 with follow-up data available at 18-24 months. Neurodevelopmental outcomes were assessed using the Bayley Scales of Infant and Toddler Development-Third Edition (BSID-III). Long-term outcomes were categorized as neurodevelopmental impairment (NDI) and significant neurodevelopmental impairment (sNDI), and effect modification due to other neonatal morbidities including receipt of antenatal steroids, GA, small for gestational age (SGA) status, sex, score for neonatal acute physiology (SNAP-II) >20, postnatal steroids, bronchopulmonary dysplasia (BPD), intraventricular hemorrhage (IVH) grade ≥3/periventricular leukomalacia (PVL), early- and late-onset sepsis, retinopathy of prematurity (ROP) and necrotizing enterocolitis (NEC) was assessed. Maternal and infant demographic characteristics and short- and long-term outcomes were compared using Pearson's Chi-square test for categorical variables and Student's t-test or the Wilcoxon rank test for continuous variables. Adjusted odds ratios (AORs) and 95% confidence intervals (CIs) were calculated using multivariable regression analysis. RESULTS: Of the 491 (18.7%) eligible preterm infants who received inotropes during the first week of life, 314 (64%) survived to NICU discharge and 245 (78%) had ND outcome data available. A total of 1775 eligible preterm infants did not receive inotropes in the first week of life; 1647 (92.7%) survived to NICU discharge and 1149 (70%) had ND outcome data. Maternal and infant characteristics associated with infants receiving inotropes included: younger maternal age, clinical chorioamnionitis, no antenatal steroids, outborn, lower GA, BW and Apgar scores at both one and five minutes; and higher SNAP-II scores (p < .05). Infants who received inotropes in the first week of life were more likely to be require postnatal steroids, had higher rates of BPD, IVH grade ≥3/PVL, early- and late-onset sepsis, ROP, NEC and mortality (p < .05). Infants who received inotropes in the first week of life also had higher rates of sensorineural or mixed hearing loss with an AOR (95% CI) of 1.99 (1.13, 3.49). After adjusting for confounding variables, there was no difference in the risk of NDI or sNDI between infants who did and did not receive inotropes in the first week of life. Of the infants with neurodevelopmental outcome data available, 186 received inotropes for ≤3 days and 59 for >3 days. After adjusting for confounding variables there was no difference in the risk of NDI or sNDI. Infants who received inotropes for >3 days were more likely to have lower BSID-III cognitive [AOR 2.43 95% CI (1.03, 5.76)] and motor scores <85 [AOR 2.38 95% CI (1.07, 5.30)] respectively. CONCLUSIONS: In this large, population-based cohort, infants who received inotropes in the first week of life were at increased risk for sensorineural or mixed hearing loss. There was no difference in NDI or sNDI after adjusting for confounding variables. A longer duration of inotrope use in the first week of life was associated with lower BSID-III cognitive and motor scores, but no difference in overall NDI or sNDI.