PediatricsPub Date : 2025-01-17DOI: 10.1542/peds.2024-068699
Sarah Friebert,Eduardo A Trujillo Rivera,Justin N Baker,Jessica D Thompkins,Daniel Grossoehme,Jennifer Needle,Maureen E Lyon
{"title":"Pediatric Advance Care Planning and Adolescent Preparedness and Quality of Life: An RCT.","authors":"Sarah Friebert,Eduardo A Trujillo Rivera,Justin N Baker,Jessica D Thompkins,Daniel Grossoehme,Jennifer Needle,Maureen E Lyon","doi":"10.1542/peds.2024-068699","DOIUrl":"https://doi.org/10.1542/peds.2024-068699","url":null,"abstract":"BACKGROUND AND OBJECTIVETo evaluate the efficacy of Family-Centered Advance Care Planning for Teens With Cancer (FACE-TC) on adolescents' quality of life.METHODSA clinical trial randomized adolescent-family dyads at a 2:1 ratio to either FACE-TC or control. FACE-TC dyads received 3 weekly 60-minute sessions: Lyon Pediatric Advance Care Planning Survey; Next Steps: Respecting Choices; and Five Wishes. Generalized mixed-effect models evaluated efficacy at 3, 6, and 12 months after intervention measured by FACIT-SP-Ex-V4 (meaning/peace, faith) and PROMIS pediatric (anxiety; depressive symptoms; pain interference, fatigue). Fisher exact tests assessed decisional support and preparedness.RESULTSAdolescents (n = 126) were mean age 17 years, 57% female, and 79% white. No significant differences were found between groups for faith or meaning/peace. At 12 months after intervention compared to control, FACE-TC increased anxiety (mean ratio 1.14; CI 1.04-1.25), depressive symptoms (mean ratio 1.12; CI 1.02-1.22), and pain interference (mean ratio 1.10; CI 1.00-1.20), but not at 3 or 6 months. FACE-TC increased fatigue at 3 months (mean ratio 1.13; CI 1.02-1.26), but not at 6 or 12 months. Compared to control, adolescents participating in FACE-TC agreed that \"I feel prepared for the future\" (76% vs 94%) and \"I feel we are now on the same page\" (76% vs 94%) at 3 months, but not at 12 months.CONCLUSIONSThere were no significant differences in quality of life between groups until 1 year, except for fatigue. FACE-TC had late effects, increasing adolescents' anxiety, depressive symptoms, and pain interference. Reassessment at 1 year is clinically important.","PeriodicalId":20028,"journal":{"name":"Pediatrics","volume":"7 1","pages":""},"PeriodicalIF":8.0,"publicationDate":"2025-01-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142988862","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Predictors and Outcomes of Extubation Failure in Preterm Neonates: A Systematic Review.","authors":"Lisiane Hoff Calegari,Medha Goyal,Sourabh Dutta,Amit Mukerji","doi":"10.1542/peds.2024-068677","DOIUrl":"https://doi.org/10.1542/peds.2024-068677","url":null,"abstract":"CONTEXTExtubation failure (EF) is common in preterm neonates and may be associated with adverse outcomes.OBJECTIVETo systematically review and meta-analyze the existing literature on predictors and outcomes of EF in preterm neonates.DATA SOURCESMEDLINE, Epub Ahead of Print, In-Process & Other Non-Indexed Citations, Embase (OvidSP), CINAHL (EBSCOHost), and Cochrane Library (Wiley) from 1995 onward. The search strategy was developed by a reference librarian.STUDY SELECTIONExperimental or observational studies reporting on predictors and/or outcomes related to EF (defined as reintubation within 7 days) in preterm neonates less than 37 weeks were eligible. Predictors included machine learning (ML) algorithms and lung ultrasound (LUS). Main outcome of interest was association of EF with mortality and/or bronchopulmonary dysplasia (BPD).DATA EXTRACTIONStudies identified by the search strategy were screened based on title and abstract. Data from included studies were extracted independently by 2 authors, along with adjudication of risk of bias. RevMan Web was used to conduct meta-analyses.RESULTSOut of 8336 studies screened, 120 were included. Neonates with lower gestational age at birth, birthweight, postmenstrual age, and weight at extubation were more likely to experience EF. Higher level of pre-extubation respiratory support, indicated by lower pre-extubation pH and higher pre-extubation mean airway pressure, fraction of inspired oxygen, and Pco2 were associated with EF risk. ML models showed variable accuracy and lower external validity. LUS may be a promising predictor, though scoring systems varied. EF was associated with higher odds of mortality and/or BPD (pooled odds ratio [OR], 4.7; 95% CI, 2.84-7.76) as well as the individual components of the composite: mortality (pooled OR, 3.87; 95% CI, 2.35-6.36) and BPD (pooled OR, 3.27; 95% CI, 2.54-4.21).LIMITATIONSAssociations were derived from unadjusted data, precluding a definitive causal relationship between EF and predictors/outcomes.CONCLUSIONSLower gestational and chronological age and higher levels of pre-extubation ventilation support were associated with EF. ML models and LUS scores require further validation in larger studies. EF was associated with mortality and/or BPD.","PeriodicalId":20028,"journal":{"name":"Pediatrics","volume":"9 1","pages":""},"PeriodicalIF":8.0,"publicationDate":"2025-01-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142988910","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
PediatricsPub Date : 2025-01-16DOI: 10.1542/peds.2024-067552
Fabio Antonio Venancio,Maria Eulina Quilião,Sanny Cerqueira de Oliveira Gabeira,Amanda Torrentes de Carvalho,Silvia Helena Dos Santos Leite,Sheila Maria Barbosa de Lima,Nathalia Dos Santos Alves,Luma da Cruz Moura,Waleska Dias Schwarcz,Adriana de Souza Azevedo,Luiz Henrique Ferraz Demarchi,Marina Castilhos Souza Umaki Zardin,Gislene Garcia de Castro Lichs,Deborah Ledesma Taira,Wagner de Souza Fernandes,Natália Oliveira Alves,Aline Etelvina Casaril Arrua,Ana Isabel do Nascimento,Lisany Krug Mareto,Micael Viana de Azevedo,Camila Guadeluppe Maciel,Márcio José de Medeiros,Moreno Magalhães de Souza Rodrigues,Zilton Vasconcelos,Karin Nielsen-Saines,Rivaldo Venâncio da Cunha,Cláudia Du Bocage Santos-Pinto,Everton Falcão de Oliveira
{"title":"Early and Long-Term Adverse Outcomes of In Utero Zika Exposure.","authors":"Fabio Antonio Venancio,Maria Eulina Quilião,Sanny Cerqueira de Oliveira Gabeira,Amanda Torrentes de Carvalho,Silvia Helena Dos Santos Leite,Sheila Maria Barbosa de Lima,Nathalia Dos Santos Alves,Luma da Cruz Moura,Waleska Dias Schwarcz,Adriana de Souza Azevedo,Luiz Henrique Ferraz Demarchi,Marina Castilhos Souza Umaki Zardin,Gislene Garcia de Castro Lichs,Deborah Ledesma Taira,Wagner de Souza Fernandes,Natália Oliveira Alves,Aline Etelvina Casaril Arrua,Ana Isabel do Nascimento,Lisany Krug Mareto,Micael Viana de Azevedo,Camila Guadeluppe Maciel,Márcio José de Medeiros,Moreno Magalhães de Souza Rodrigues,Zilton Vasconcelos,Karin Nielsen-Saines,Rivaldo Venâncio da Cunha,Cláudia Du Bocage Santos-Pinto,Everton Falcão de Oliveira","doi":"10.1542/peds.2024-067552","DOIUrl":"https://doi.org/10.1542/peds.2024-067552","url":null,"abstract":"BACKGROUNDZika virus (ZIKV) infection during pregnancy can lead to congenital Zika syndrome (CZS) and may result in neurodevelopmental alterations in exposed children, with and without CZS. This study aimed to evaluate ZIKV infection during pregnancy as a risk factor for early and long-term adverse outcomes.METHODSThis retrospective-prospective, matched cohort study was conducted in Mato Grosso do Sul, Brazil. Mother-infant pairs exposed and unexposed to ZIKV during pregnancy were enrolled in the study from 2018 to 2022. Clinical and epidemiological data from the gestational period and neonatal evaluations were obtained from the Brazilian health surveillance system. Children were assessed for early (congenital anomalies) and long-term adverse outcomes (neurodevelopmental delay). Incidence risk ratio (IRR) and crude odds ratio (OR) were used to assess associations.RESULTSThe risk of adverse outcomes in exposed children was nearly 3-fold higher (IRR, 2.7; 95% CI, 1.4-5.1) compared with the control group. The risk of motor (IRR, 3.4; 95% CI, 1.2-9.6) and cognitive delay (IRR, 4.7; 95% CI, 1.7-13.0) was significantly higher in exposed children. In 44% of pregnancies wherein maternal infection occurred in the first trimester, at least 1 adverse event was identified in the child, with 11.2-fold greater odds of adverse outcomes (OR, 11.2; 95% CI, 3.6-35.0) compared with children of mothers infected in the third trimester.CONCLUSIONSChildren exposed to ZIKV in utero, even without CZS, demonstrate a greater risk for neurodevelopmental delay in early childhood, with the timing of maternal infection being a significant predictive risk factor.","PeriodicalId":20028,"journal":{"name":"Pediatrics","volume":"99 1","pages":""},"PeriodicalIF":8.0,"publicationDate":"2025-01-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142988911","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
PediatricsPub Date : 2025-01-15DOI: 10.1542/peds.2024-067035
Katelynn E Boerner,Danya A Fox,Levi Du,Daniel L Metzger,Sheila Marshall,Eva M Moore,Pam Narang,Marie-Noelle Wharton,Tim F Oberlander
{"title":"Experiences of Gender-Diverse Youth Living With Chronic Pain.","authors":"Katelynn E Boerner,Danya A Fox,Levi Du,Daniel L Metzger,Sheila Marshall,Eva M Moore,Pam Narang,Marie-Noelle Wharton,Tim F Oberlander","doi":"10.1542/peds.2024-067035","DOIUrl":"https://doi.org/10.1542/peds.2024-067035","url":null,"abstract":"BACKGROUNDAlthough sex differences in pain are well documented, little is known regarding the relationship between gender and pain. Gender-diverse youth experience unique pain risk factors, including minority stress exposure, but are underrepresented in research.OBJECTIVEElicit experiences of gender-diverse youth who live with chronic pain.METHODSSemistructured interviews were conducted with youth virtually using Zoom. Youth were recruited from a Canadian tertiary care pediatric hospital, community-based clinics, and the general population. Interviews were recorded, transcribed, and analyzed with a patient partner using reflexive thematic analysis, integrating relevant existing theoretical and empirical models for understanding gender and pain, identity development, minority stress, and intersectionality.RESULTSThe final sample included 19 youth who represented a variety of gender identities and pain conditions and reported accessing a range of types and levels of care. Three themes were identified through qualitative analysis: (1) the fight to legitimize both their pain and gender, (2) the tension between affirming gender and managing pain and the role of gender euphoria as a buffer against pain, and (3) the role of intersecting (eg, neurodiversity and race) identities in understanding gender-diverse youths' pain experiences.CONCLUSIONSIn a diverse sample of gender-diverse youth who live with chronic pain, experiences of invalidation and difficulty managing pain were experienced in the context of unique stressors and sources of joy in living as a gender-diverse individual. These results point to the need for more intersectional and affirming pain research and integration of findings into clinical practice.","PeriodicalId":20028,"journal":{"name":"Pediatrics","volume":"30 1","pages":""},"PeriodicalIF":8.0,"publicationDate":"2025-01-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142988912","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"A Controversial Clinical Case of a Child With Hypoplastic Left Heart Syndrome.","authors":"Agustín Silberberg,Thomas Iolster,Christian Pizarro,Adrienne Borschuk,Josefina Castro Méndez,Christian Kreutzer,Armand H Matheny Antommaria","doi":"10.1542/peds.2024-065655","DOIUrl":"https://doi.org/10.1542/peds.2024-065655","url":null,"abstract":"We present the case of a child born with hypoplastic left heart syndrome. After developing multiple complications following the first surgical stage (Norwood procedure), her parents decide not to proceed with the second stage (Glenn operation). Cardiac surgeons, pediatric intensivists, a psychologist, and a bioethicist analyze whether further surgical intervention is ethically obligatory. A cardiac surgeon believes that after getting beyond the difficulties of the first stage, the patient seems to be a reasonable candidate for the next procedure. He considers the intervention to be ethically permissible edging on ethically obligatory. The psychologist describes the emotional impact of traumatic experiences like the one experienced by this family. She analyses whether their decision is likely to be aligned with their values and explains the possible mechanisms that justify a decision not to continue with surgery. Physicians, a surgeon, and a bioethicist analyze the parents' perception of excessive suffering based on severe complications that were far worse than expected. They believe that, even if proceding with the Glenn operation is in the child's best interest, state intervention to require the surgery over the parents' objection is not justified.","PeriodicalId":20028,"journal":{"name":"Pediatrics","volume":"30 1","pages":""},"PeriodicalIF":8.0,"publicationDate":"2025-01-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142988913","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
PediatricsPub Date : 2025-01-01DOI: 10.1542/peds.2024-068856
Lyubina C Yankova, Corrie E McDaniel, Ellen Kerns, Alaina Shine, Beatriz A Ruiz, Hayly A Caruso, Paul L Aronson
{"title":"Diagnostic Performance of AAP-Recommended Inflammatory Markers in Febrile Infants Aged 60 Days or Younger.","authors":"Lyubina C Yankova, Corrie E McDaniel, Ellen Kerns, Alaina Shine, Beatriz A Ruiz, Hayly A Caruso, Paul L Aronson","doi":"10.1542/peds.2024-068856","DOIUrl":"10.1542/peds.2024-068856","url":null,"abstract":"","PeriodicalId":20028,"journal":{"name":"Pediatrics","volume":" ","pages":""},"PeriodicalIF":6.2,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142786447","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
PediatricsPub Date : 2025-01-01DOI: 10.1542/peds.2024-068248
Thomas J Sandora
{"title":"Rotavirus Vaccination in the NICU: It's Time to Turn Opportunity Into Action.","authors":"Thomas J Sandora","doi":"10.1542/peds.2024-068248","DOIUrl":"10.1542/peds.2024-068248","url":null,"abstract":"","PeriodicalId":20028,"journal":{"name":"Pediatrics","volume":" ","pages":""},"PeriodicalIF":6.2,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142801989","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
PediatricsPub Date : 2025-01-01DOI: 10.1542/peds.2024-068364
Ahmed Ibrahim, David Jackson
{"title":"Autism, Electrical Status Epilepticus in Sleep, and a Likely Pathogenic SEMA6B Variant.","authors":"Ahmed Ibrahim, David Jackson","doi":"10.1542/peds.2024-068364","DOIUrl":"10.1542/peds.2024-068364","url":null,"abstract":"<p><p>This case report describes a boy aged 8 years with autism spectrum disorder who was diagnosed with electrical status epilepticus in sleep (ESES) and found to have a likely pathogenic variant in the SEMA6B gene. The patient presented with developmental regression and cognitive decline. An electroencephalogram demonstrated continuous spike-and-wave discharges during sleep, a hallmark of ESES. Genetic testing identified a De Novo likely pathogenic variant in SEMA6B, a gene implicated in neurodevelopmental disorders and epilepsy. Although the association between SEMA6B mutations and ESES is not well established, this case suggests that the genetic variant may have contributed to the patient's clinical presentation. This is the first reported instance of ESES being linked to a SEMA6B gene variant, highlighting the importance of genetic testing in similar cases. The findings could have significant implications for the understanding and management of ESES in autistic patients with behavioral difficulties. They also underscore the need for further research into the role of SEMA6B in epilepsy and neurodevelopmental disorders.</p>","PeriodicalId":20028,"journal":{"name":"Pediatrics","volume":" ","pages":""},"PeriodicalIF":6.2,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142688420","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
PediatricsPub Date : 2025-01-01DOI: 10.1542/peds.2024-067473
Devlynne S Ondusko, Susanne Klawetter, Emily Hawkins Carter, Morinne Osborne, Jaime W Peterson, Veronica I Underwood Carrasco, Astrid Platteau, Roberta Suzette Hunte
{"title":"The Needs and Experiences of Black Families in the Neonatal Intensive Care Unit.","authors":"Devlynne S Ondusko, Susanne Klawetter, Emily Hawkins Carter, Morinne Osborne, Jaime W Peterson, Veronica I Underwood Carrasco, Astrid Platteau, Roberta Suzette Hunte","doi":"10.1542/peds.2024-067473","DOIUrl":"10.1542/peds.2024-067473","url":null,"abstract":"<p><p></p><p><strong>Objectives: </strong>To identify opportunities for improvement in quality of care, we explore Black families' experiences of family support in the neonatal intensive care unit (NICU) during their infant's hospital stay.</p><p><strong>Methods: </strong>Semistructured qualitative interviews or focus groups (FGs) were conducted to explore Black families' experiences of NICU hospitalization. Inclusion criteria were self-identification as a Black family member and infant admission to our NICU between January 2020 and February 2022. We conducted reflexive thematic analysis of recorded transcripts using Dedoose software.</p><p><strong>Results: </strong>Three interviews and 2 FGs were conducted with 9 unique families (n = 13 individuals). We organized 10 key themes into \"Experiences\" and \"Recommendations.\" Experience themes included distrust and fear of the medical setting, hypervigilance and trauma trajectory formation, the myth of \"Black hardiness,\" policing and surveillance, and undermining of Black parenting. Recommendation themes implored NICU staff to earn rather than assume trust, respect family concerns, improve mental health support, provide compassionate care, and support the parenting role.</p><p><strong>Conclusions: </strong>In this single-center qualitative study of Black families' NICU encounters, families continue to experience differential treatment, which reinforces an untrustworthy medical system perpetuating structural racism. Family recommendations for improving care through transparent communication, advocacy and mental health support, increased engagement in their parental role, and decreasing biased treatment and provision of resources may improve their experience and mitigate hypervigilance and trajectory formation in our NICU.</p>","PeriodicalId":20028,"journal":{"name":"Pediatrics","volume":" ","pages":""},"PeriodicalIF":6.2,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142854974","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
PediatricsPub Date : 2025-01-01DOI: 10.1542/peds.2024-068817
Joseph L Wright
{"title":"Racial Socialization to Keep Children Safe: All of Our Responsibility.","authors":"Joseph L Wright","doi":"10.1542/peds.2024-068817","DOIUrl":"10.1542/peds.2024-068817","url":null,"abstract":"","PeriodicalId":20028,"journal":{"name":"Pediatrics","volume":" ","pages":""},"PeriodicalIF":6.2,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142813978","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}