scholarly journals 26 Not What Clinicians Thought: Decisional Regret in Parents of Extremely Preterm Children

2020 ◽  
Vol 25 (Supplement_2) ◽  
pp. e9-e10
Author(s):  
Emilie Thivierge ◽  
Laurie-Anne Duquette ◽  
Thuy-An Mai-Vo ◽  
Aurélie Fortin ◽  
Magdalena Jaworski ◽  
...  

Abstract Background Preterm birth is associated with higher risk of death and severe neurodevelopmental impairment. There is an increased risk in extremely preterm infants, raising questions among ethicists and clinicians as to whether providing active care to infants born at the lower extreme is worth the outcomes, and if these outcomes are a source of decisional regrets for parents. Objectives Explore decisional regrets in parents of extremely preterm children. Design/Methods We consecutively recruited all parents of infants born <29 weeks’ gestational age, aged between 18 months corrected age and 7 years, and seen for neonatal follow-up at a single tertiary center over a one-year period. We asked the following question: “Knowing what you know now, is there anything you would have done differently?” Answers were analyzed independently by two reviewers using qualitative methodology, and discrepancies were resolved by a third reviewer. Mixed methods were used to examine the frequency of each theme and associate parental answers to demographic and clinical factors. Results Responses were obtained from 249 parents (98% participation rate). The following main themes emerged: (1) Nothing – I did what I could or was told to do: 53%; (2) Regrets about self-care: 31%; “I would listen to the nurses’ advice to sleep more” (3) Guilt related to the impression preterm labor could have been prevented by them or the medical team: 19%; “I would have pushed for better care and monitoring during pregnancy. I felt as though I wasn’t listened to when I thought I was in labour when sure enough I was” (4) Regrets about parental role in decision-making: 15%; “I would speak up more at the beginning of the hospitalisation”. None of the parents reported on regretting any life-and-death decisions they made at birth and in the neonatal unit. Conclusion In our cohort, more than half of parents of surviving preterm infants did not have any regrets associated to their NICU experience. However, lessons can be learned to improve parental support, self-care and solutions to improve their role as parents. Unlike what can be stated using “opinion-based medicine”, limiting or forgoing intensive care is not a solution to eliminate decisional regrets in parents.

Neonatology ◽  
2021 ◽  
pp. 1-7
Author(s):  
Faiza Latheef ◽  
Hanna Wahlgren ◽  
Helene Engstrand Lilja ◽  
Barbro Diderholm ◽  
Mattias Paulsson

<b><i>Introduction:</i></b> Necrotizing enterocolitis (NEC) is a disease predominantly affecting preterm infants. The administration of hyperosmolar solutions could lead to the development of NEC. The objective of this study was to measure the osmolality of enteral medications used in clinical practice and to assess the risk of NEC following exposure to hyperosmolar medications. <b><i>Methods:</i></b> A retrospective cohort study in extremely preterm infants (gestational age &#x3c;28 weeks) born between 2010 and 2016 at a tertiary neonatal intensive care unit in Sweden. 465 infants were identified via the Swedish Neonatal Quality register. Data relating to enteral administrations received during a two-week period were collected from the medical records. The osmolalities of medications were measured using an osmometer. Logistic regression was used to calculate the odds ratio of developing NEC. <b><i>Results:</i></b> A total of 253 patients met the inclusion criteria. The osmolalities of 5 commonly used medications significantly exceeded the recommended limit of 450 mOsm/kg set by the American Academy of Paediatrics (AAP). Most patients (94%) received at least one hyperosmolar medication. No significant risk of developing NEC could be found. <b><i>Conclusion:</i></b> The medications used in clinical practice can significantly exceed the limit set by the AAP. This study does not indicate an increased risk of developing NEC in extremely preterm infants following exposure to hyperosmolar medications. Further studies in larger cohorts are needed to determine the specific cut-off level of osmolality in relation to the pathogenesis of NEC.


2020 ◽  
Author(s):  
Jia Chen ◽  
Yabo Mei ◽  
Xue Du ◽  
Qiuping Li ◽  
Zizhen Wang ◽  
...  

Abstract Backgroud Extreme preterm infants are at a high risk for developing preterm complications and death. Despite advances in medical care, many survivors face a lifetime of disability. Objective To assess the short term safety of and four-year follow-up outcomes of allogenic, human umbilical cord blood (hUCB) derived mononuclear cells(MNCs) infusion to extreme preterm infants with high risk potential of death. Method This study was a phase I, open-label, single-arm, single-center trial to evaluate the safety of allogenic, hUCB-MNCs infusion for extreme preterm infants with high risk potential of death. HUCB MNCs characteristics, pre- and postinfusion vital signs and laboratory investigations were recorded. Temporal profiles of cytokines and growth factors from blood were test. Clinical data including mortality rates, preterm complications and follow-up outcomes were recorded. Results After processing, relatively MNCs mean (1.9±0.8) ×106/kg; volume mean (11.25±2.12)ml/kg were infused to 10 extremely preterm infants with high risk of death. No adverse effects were noticed during treatment. 40% received extubation and weaned to nasal CPAP successfully; 30% received lower FiO2; no infants suffered from late onset sepsis; 30% received poor response to MNCs infusion. 40% infants suffered from ROP and only one infant needed laser surgery. No patients suffered from NEC after MNCs infusion. All ten infants who received hUCB MNCs infusion survived inhospital and prevent deterioration of clinical features, but 4 infants discharged against the advice of the doctor by their parents and lost connection. Regarding the rest 6 infants, no home oxygen therapy and rehospitalization, no suffered from other long-term respiratory complications at visit 1~visit 3. One infant showed cerebral palsy at visit 1, no clinical evidence associated this with MNCs infusion. Blood level of HGF significantly increased, but MMP-9, IL-6, IL-8, TNF-α and TGF-β levels were significantly lower at 24h post infusion compared with baseline (P < 0.05).Conclusions Collection, preparation, and infusion of allogenic hUCB MNCs to extreme preterm infants is feasible and safe. Trial registration The study was registered on Chinese Clinical Trials.gov (NO. ChiCTR–OPN - 15006932). Registered 17 August 2015, http://www.chictr.org.cn/edit.aspx?pid=11662&htm=4.


Children ◽  
2019 ◽  
Vol 6 (8) ◽  
pp. 90
Author(s):  
Maeve Morgan-Feir ◽  
Andrea Abbott ◽  
Anne Synnes ◽  
Dianne Creighton ◽  
Thevanisha Pillay ◽  
...  

Extremely preterm infants are at increased risk of motor impairment. The Canadian Neonatal Follow-Up Network (CNFUN) afforded an opportunity to study the outcomes of extremely preterm children. The purpose of this study was to compare 18-month corrected age (CA) motor outcomes of extremely preterm infants with parent-reported functional outcomes at 3 years CA. CNFUN data of 1376 infants were used to conduct chi-square analyses to compare Bayley-III motor scores (composite, gross, and fine motor) at 18 months CA with parent-reported Ages and Stages Questionnaire motor scores (gross and fine motor) at 3 years CA. The correlation of motor scores at 18-months CA with parent-reported gross and fine motor scores at 3 years CA was also examined. We found that 1 in 5 infants scoring within or above the average range on the Bayley-III had parent-reported functional fine and gross motor difficulties at 3 years CA. Bayley-III scores were only moderately correlated with functional motor outcomes. Results of the study suggest that the Bayley-III at 18 months CA was able to detect the majority of infants with motor problems, but not all; therefore, ongoing follow-up of extremely preterm infants is required. The Bayley-III motor composite score has greater clinical utility compared to sub-scale scores.


2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Ga Won Jeon ◽  
Minkyung Oh ◽  
Yun Sil Chang

AbstractNew definitions for bronchopulmonary dysplasia (BPD) have recently been suggested, and an accurate diagnosis, including severity classification with proper definition, is crucial to identify high-risk infants for appropriate interventions. To determine whether recently suggested BPD definitions can better predict long-term outcomes of BPD in extremely preterm infants (EPIs) than the original BPD definition, BPD was classified with severity 1, 2, and 3 using three different definitions: definition A (original), National Institute of Child Health and Human Development (NICHD) definition in 2001; definition B, the modified NICHD 2016 definition (graded by the oxygen concentration and the respiratory support at 36 weeks’ postmenstrual age [PMA]); and definition C, the modified Jensen 2019 definition (graded by the respiratory support at 36 weeks’ PMA). We evaluated 1050 EPIs using a national cohort. Whereas EPIs with grade 2 or 3 BPD as per definition A did not show any increase in the risk, EPIs with BPD diagnosed by definition B and C showed significantly increased risk for poor outcomes, such as respiratory mortality and morbidities, neurodevelopmental delay, and growth restriction at 18–24 months of corrected age. The recently suggested definition and severity grading better reflects long-term childhood morbidities than the original definition in EPIs.


2019 ◽  
Author(s):  
Mathias Hansen ◽  
Adelina Pellicer ◽  
Christian Gluud ◽  
Eugene Dempsey ◽  
Jonathan Mintzer ◽  
...  

Abstract Background Cerebral oxygenation monitoring may reduce the risk of death and neurologic complications in extremely preterm infants, but no such effects have yet been demonstrated in preterm infants in sufficiently powered randomised clinical trials. The objective of the SafeBoosC-III trial is to investigate the benefits and harms of treatment based on near-infrared spectroscopy (NIRS) monitoring compared with treatment as usual for extremely preterm infants. Methods/Design SafeBoosC III is an investigator-initiated multinational randomized, pragmatic phase III clinical trial. It is open label, but parts will be conducted blinded to intervention. Inclusion criteria consists of infants born below 28 weeks postmenstrual age and parental informed consent (unless the site has is using ‘opt-out’ or deferred consent). Exclusion criteria consists of missing parental informed consent (or if ‘opt-out’ is used, lack of record that clinical staff have explained the trial and the ‘opt-out’ consent process to parents and/or a record in the infant’s clinical file of parents’ decision to opt-out); decision not to provide full life support; and no possibility to initiate cerebral NIRS oximetry within 6 hours after birth. Participants will be randomized 1:1 into either the experimental or control group. Participants in the experimental group will be monitored during the first 72 hours of life with a cerebral NIRS oximeter. Cerebral hypoxia will be treated according to an evidence-based treatment guideline. Participants in the control group will not undergo cerebral oxygenation monitoring and will receive treatment as usual. Each participant will be followed up at 36 weeks postmenstrual age. The primary outcome will be a composite of either death or severe brain injury detected on any of the serial cranial ultrasound scans that are routinely performed in these infants up to 36 weeks postmenstrual age. To detect a 22% relative risk difference between the experimental and control group, we intend to randomize a cohort of 1600 infant. Discussion Treatment guided by cerebral NIRS oximetry has the potential to decrease risk of death or survival with severe brain injury in preterm infants. There is an urgent need to assess the clinical effects of NIRS monitoring among preterm neonates.


Author(s):  
Dhruv Gupta ◽  
Rachel Greenberg ◽  
Girija Natarajan ◽  
Sanket Jani ◽  
Amit Sharma ◽  
...  

Background and Objectives: Extubation failure in preterm infants is associated with increased risk of mortality and morbidities. There is limited evidence to suggest if the increased morbidities are due to inherent differences among infants who fail or succeed; or whether these are due to a true respiratory setback among those who fail extubation. The aim of this study was to evaluate the respiratory status of infants who fail extubation and to assess the time taken for these infants to achieve pre-extubation respiratory status. Methods: This was a retrospective study of infants with birth weight ≤1,250 g who were born between January 2009 and December 2016. Infants were eligible if they failed first elective extubation. Extubation failure was defined as need for re-intubation within 5 days of extubation. Ventilator settings, blood gas parameters, respiratory severity score and ventilation index were used to assess respiratory status of infants. Results: Of 384 infants, 76% were successful and 24% failed extubation. Among those who failed extubation 91%, 77% and 56% infants remained intubated at 24 hours, 72 hours and 7 days, respectively. Respiratory status was worse at 24 hours and 72 hours after re-intubation when compared to pre-extubation levels. The median times for respiratory severity score and ventilation index to reach pre-extubation levels were 4 days and 7 days respectively. Conclusion: Among preterm infants, failed elective extubation is associated with a significant setback in the respiratory status. Infants who fail an extubation attempt may not achieve pre-extubation respiratory status for many days after reintubation.


2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Erika Baraldi ◽  
Mara Westling Allodi ◽  
Kristina Löwing ◽  
Ann-Charlotte Smedler ◽  
Björn Westrup ◽  
...  

Abstract Background Improved neonatal care has resulted in increased survival rates among infants born after only 22 gestational weeks, but extremely preterm children still have an increased risk of neurodevelopmental delays, learning disabilities and reduced cognitive capacity, particularly executive function deficits. Parent-child interaction and parental mental health are associated with infant development, regardless of preterm birth. There is a need for further early interventions directed towards extremely preterm (EPT) children as well as their parents. The purpose of this paper is to describe the Stockholm Preterm Interaction-Based Intervention (SPIBI), the arrangements of the SPIBI trial and the chosen outcome measurements. Methods The SPIBI is a randomized clinical trial that includes EPT infants and their parents upon discharge from four neonatal units in Stockholm, Sweden. Inclusion criteria are EPT infants soon to be discharged from a neonatal intensive care unit (NICU), with parents speaking Swedish or English. Both groups receive three initial visits at the neonatal unit before discharge during the recruitment process, with a strengths-based and development-supportive approach. The intervention group receives ten home visits and two telephone calls during the first year from a trained interventionist from a multi-professional team. The SPIBI intervention is a strengths-based early intervention programme focusing on parental sensitivity to infant cues, enhancing positive parent-child interaction, improving self-regulating skills and supporting the infant’s next small developmental step through a scaffolding process and parent-infant co-regulation. The control group receives standard follow-up and care plus extended assessment. The outcomes of interest are parent-child interaction, child development, parental mental health and preschool teacher evaluation of child participation, with assessments at 3, 12, 24 and 36 months corrected age (CA). The primary outcome is emotional availability at 12 months CA. Discussion If the SPIBI shows positive results, it could be considered for clinical implementation for child-support, ethical and health-economic purposes. Regardless of the outcome, the trial will provide valuable information about extremely preterm children and their parents during infancy and toddlerhood after regional hospital care in Sweden. Trial registration The study was registered in ClinicalTrials.gov in October 2018 (NCT03714633).


Author(s):  
Zakariya Bambala Puthattayil ◽  
Thuy Mai Luu ◽  
Marc Beltempo ◽  
Shannon Cross ◽  
Thevanisha Pillay ◽  
...  

Abstract Objective Survivors of extremely preterm birth are at risk of re-hospitalization but risk factors in the Canadian population are unknown. Our objective is to identify neonatal, sociodemographic, and geographic characteristics that predict re-hospitalization in Canadian extremely preterm neonates. Methods This is a retrospective analysis of a prospective observational cohort study that included preterm infants born 22 to 28 weeks’ gestational age from April 1, 2009 to September 30, 2011 and seen at 18 to 24 months corrected gestational age in a Canadian Neonatal Follow-Up Network clinic. Characteristics of infants re-hospitalized versus not re-hospitalized are compared. The potential neonatal, sociodemographic, and geographic factors with significant association in the univariate analysis are included in a multivariate model. Results From a total of 2,275 preterm infants born at 22 to 28 weeks gestation included, 838 (36.8%) were re-hospitalized at least once. There were significant disparities between Canadian provincial regions, ranging from 25.9% to 49.4%. In the multivariate logistic regression analysis, factors associated with an increased risk for re-hospitalization were region of residence, male sex, bronchopulmonary dysplasia, necrotizing enterocolitis, prolonged neonatal intensive care unit (NICU) stay, ethnicity, Indigenous ethnicity, and sibling(s) in the home. Conclusion Various neonatal, sociodemographic, and geographic factors predict re-hospitalization of extremely preterm infants born in Canada. The risk factors of re-hospitalization provide insights to help health care leaders explore potential preventative approaches to improve child health and reduce health care system costs.


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