The Content and Quality of Publicly-Available Online Information About Congenital Diaphragmatic Hernia (Preprint)

2021 ◽  
Author(s):  
Frank Coyle Soltys ◽  
Kimi Spilo ◽  
Mary C Politi
Keyword(s):  
Congenital Diaphragmatic Hernia ◽  
Diaphragmatic Hernia ◽  
Neonatal Intensive Care ◽  
Pregnancy Termination ◽  
The Internet ◽  
Online Information ◽  
Comprehensive Information ◽  
Support Resources ◽  
Internet Searches

BACKGROUND Congenital Diaphragmatic Hernia (CDH) diagnosis in an infant is distressing for parents. Parents often feel unable to absorb the complexities of CDH during prenatal consultations and use the Internet to supplement their knowledge and decision-making. OBJECTIVE We aimed to examine the content and quality of publicly-available, internet-based CDH information. METHODS We conducted internet searches across two popular search engines. Websites were included if they contained CDH information and were publicly available. We developed a coding instrument to evaluate websites. Two coders were trained, achieved interrater reliability, and rated remaining websites independently. Descriptive statistics were performed. RESULTS Searches yielded 520 websites; 91 met inclusion criteria and were analyzed. Most websites provided basic CDH information including describing the defect (94.1%), need for neonatal intensive care (83.5%) and surgical correction (86.8%). Few mentioned palliative care, decisions about pregnancy termination (14.2%), or support resources (23.1%). CONCLUSIONS Findings highlight the variability of information about CDH on the internet. Clinicians should work to develop and/or identify reliable, comprehensive information about CDH to support parents.

Hérnia Diafragmática Congênita: Relato de Caso/ Congenital Diaphragmatic Hernia: Case Report

1970 ◽  
Vol 3 (1) ◽  
pp. 27-34
Author(s):  
Lucas Tavares Dos Santos ◽  
Tânia Massini Evangelista
Keyword(s):  
Case Report ◽  
Congenital Diaphragmatic Hernia ◽  
Diaphragmatic Hernia ◽  
Neonatal Intensive Care ◽  
Esophageal Hiatus ◽  
Bochdalek Hernia ◽  
Severe Respiratory Distress ◽  
X Ray ◽  
Venous Catheterization ◽  
Terapia Intensiva

Introdução: A hérnia diafragmática congênita é a falha do fechamento embrionário do músculo diafragmático, resultando em um defeito de continuidade. Esta patologia pode ocorrer pela passagem de estruturas do abdome através de um defeito no diafragma, ou haver herniação parcial do estômago através do hiato esofágico, paralisia frênica com deslocamento do conteúdo abdominal para cima, mas sem herniação, e, eventração do diafragma. Casuística: Foi relatado um caso de hérnia diafragmática congênita, hérnia de Bochdalek, em um recém – nascido do sexo feminino, que nos ultra-sonografias da gestante apresentavam sem alterações. O diagnóstico da patologia foi feito apenas após a realização de raios-X de tórax e abdome para confirmar a posição do cateterismo umbilical venoso. Discussão/Conclusão: A apresentação clínica da hérnia de diafragmática congênita inclui desconforto respiratório moderado a grave com repercussão sistêmica. O diagnóstico, em cerca de 80% dos casos, é feito por ultrassom pré-natal. O tratamento proposto foi intubação endotraqueal com ventilação mecânica e programação para correção cirúrgica da hérnia. Após correção cirúrgica da patologia, a paciente permaneceu na unidade de terapia intensiva neonatal por 21 dias para acompanhamento de pós – operatório e intercorrências na evolução. Palavras-chave: hérnia diafragmática congênita, recém-nascido, hérnia de BochdalekABSTRACTIntroduction: Congenital diaphragmatic hernia is the failure of embryonic closure of the diaphragm, resulting in a lack of continuity. This condition can occur by passing structures of the abdomen through a defect in the diaphragm, or be part herniation of the stomach through the esophageal hiatus, phrenic paralysis with displacement of abdominal contents up but no herniation, and eventration of the diaphragm. Case Report: We report a case congenital diaphragmatic hernia, such as Bochdalek hernia, in a new - born female that in ultrasounds of pregnant women showed without change. The diagnosis of the disease was made only after conducting X-ray of the chest and abdomen to confirm the position of umbilical venous catheterization. Discussion/Conclusion: Clinical presentation of congenital diaphragmatic hernia includes moderate to severe respiratory distress with systemic repercussions. The diagnosis in about 80% of the cases is done by ultrasound prenatally. The proposed treatment was endotracheal intubation with mechanical ventilation and programming for surgical correction of the hernia. After surgical pathology, the patient remained in neonatal intensive care unit for 21 days to monitor post - operative complications and evolution.  Keywords: congenital diaphragmatic hernia, newborn, Bochdalek hernia 

Mothers of Infants With Congenital Diaphragmatic Hernia Describe “Breastfeeding” in the Neonatal Intensive Care Unit: “As Long as It’s My Milk, I’m Happy”

2017 ◽  
Vol 33 (3) ◽  
pp. 524-532 ◽  
Author(s):  
Elizabeth B. Froh ◽  
Janet A. Deatrick ◽  
Martha A. Q. Curley ◽  
Diane L. Spatz
Keyword(s):  
Intensive Care Unit ◽  
Intensive Care ◽  
Birth Weight ◽  
Low Birth Weight ◽  
Neonatal Intensive Care Unit ◽  
Congenital Diaphragmatic Hernia ◽  
Diaphragmatic Hernia ◽  
Neonatal Intensive Care ◽  
Safety Net ◽  
Prospective Longitudinal

Background: Very little is known about the breastfeeding experience of mothers of infants born with congenital anomalies and cared for in the neonatal intensive care unit (NICU). Often, studies related to breastfeeding and lactation in the NICU setting are focused on the mothers of late preterm, preterm, low-birth-weight, and very-low-birth-weight infants. Congenital diaphragmatic hernia (CDH) is an anatomic malformation of the diaphragm and affects 1 in every 2,000 to 4,000 live births. Currently, there are no studies examining the health outcomes of infants with CDH and the effect of human milk. Research aim: This study aimed to describe the breastfeeding experience of mothers of infants with CDH cared for in the NICU. Methods: A prospective, longitudinal qualitative descriptive design was used. Phased interviews were conducted with a purposive sample of 11 CDH infant–mother dyads from a level 3 NICU in a children’s hospital. Results: Six themes emerged from the data: (a) hopeful for breastfeeding, (b) latching on . . . to the pump, (c) we’ve already worked so hard, (d) getting the hang of it—it’s getting easier, (e) a good safety net, and (f) finding a way that works for us. Conclusion: For this population of CDH infant–mother dyads, the term breastfeeding is not exclusive to direct feeding at the breast and the mothers emphasized the significance of providing their own mother’s milk through a combination of feeding mechanisms to their infants with CDH.

Unilateral renal agenesis in a neonate with congenital diaphragmatic hernia

Open Medicine ◽  
2013 ◽  
Vol 8 (3) ◽  
pp. 358-361
Author(s):  
Kyoung Han ◽  
Kwang Kim ◽  
Jee Chang ◽  
Young Kim
Keyword(s):  
Congenital Diaphragmatic Hernia ◽  
Diaphragmatic Hernia ◽  
Neonatal Intensive Care ◽  
Renal Agenesis ◽  
Left Kidney ◽  
Maternity Hospital ◽  
Unilateral Renal Agenesis ◽  
Spontaneous Vaginal Delivery ◽  
Left Pleural Cavity ◽  
Dimercaptosuccinic Acid Scintigraphy

AbstractCongenital diaphragmatic hernia (CDH) is a rare and severe disorder with a high mortality rate among infants. Unilateral renal agenesis (URA) is a relatively common congenital urinary malformation. Here, we present the case of a newborn infant with left CDH associated with ipsilateral renal agenesis. The male patient was born weighing 3.850 g through normal spontaneous vaginal delivery at 38 weeks and 6 days of gestational age at a maternity hospital. He was transferred to our neonatal intensive care unit due to respiratory distress with tachypnea, grunting and cyanosis after birth. A chest radiography indicated parts of the bowel in the thoracic cavity, consistent with CDH. Renal ultrasonography indicated no kidney structure on the left side and a 5.6 cm right kidney with normal echogenicity. Repair of the diaphragmatic hernia was performed three days after birth. Most of the colon, small bowel, stomach and spleen were located in the left pleural cavity, but the left kidney was not seen. Subsequent dimercaptosuccinic acid scintigraphy indicated non-visualized functional cortical uptake in the left kidney on day 13 after birth. Thus, we report the successful treatment of a patient with CDH accompanied by URA.

DOZ047.115: Quality and readability of esophageal atresia information on the Internet

2019 ◽  
Vol 32 (Supplement_1) ◽  
Author(s):  
B R O’Connor ◽  
E Doherty ◽  
F Friedmacher ◽  
L Vernon ◽  
T S Paran
Keyword(s):  
Esophageal Atresia ◽  
Oesophageal Atresia ◽  
The Internet ◽  
Online Information ◽  
Search Term ◽  
Flesch Reading Ease ◽  
Ease Score ◽  
The Mean ◽  
Google Search

Abstract Introduction Increasingly in pediatric surgical practice, patients, their parents, and surgeons alike use the Internet as an easily and quickly accessible source of information about conditions and their treatment. The quality and reliability of this information may often be unregulated. We aim to objectively assess the online information available relating to esophageal atresia and its management. Methods We performed searches for ‘oesophageal atresia’ and ‘esophageal atresia’ using the Google, Yahoo, and Bing engines to encompass both European and American spellings. We assessed the first 20 results of each search and excluded duplicates or unrelated pages. The DISCERN score and the Health on the Net Foundation Code (HONcode) toolbar were utilized to assess the quality of information on each website. We evaluated readability with the Flesch reading ease (FRE) and the Flesch–Kincaid grade (FKG). Results Of the original 120 hits, 61 were excluded (51 duplicates, 10 unrelated). Out of 59 individual sites reviewed, only 13 sites were HONcode approved. The mean overall DISCERN score was 52.55 (range: 22–78). The mean DISCERN score for the search term ‘oesphageal atresia’ was 57 (range: 22–78) in comparison to 59.03 for ‘esophageal atresia’ (range: 27–78). Google search had the lowest overall mean DISCERN score at 54.83 (range: 35–78), followed by Yahoo at 58.03 (range: 22–78), and Bing with the highest overall mean score of 61.2 (range: 27–78). The majority of websites were graded excellent (≥63) or good (51–62), 43% and 27%, respectively; 20% were scored as fair (39–50), with 10% being either poor (27–38) or very poor (≤26). In terms of readability, the overall Flesch Reading Ease score was 33.02, and the overall Flesch–Kincaid grade level was 10.3. Conclusions The quality of freely available online information relating to esophageal atresia is generally good but may not be accessible to everyone due to being relatively difficult to read. We should direct parents towards comprehensive, high-quality, and easily readable information sources should they wish to supplement their knowledge about esophageal atresia and its management.

Long-Term Health-Related Quality of Life in Survivors of Congenital Diaphragmatic Hernia

2020 ◽  
Vol 30 (03) ◽  
pp. 273-278
Author(s):  
Gabrielle Derraugh ◽  
Suyin A. Lum Min ◽  
Richard Keijzer
Keyword(s):  
Quality Of Life ◽  
General Population ◽  
Congenital Diaphragmatic Hernia ◽  
Diaphragmatic Hernia ◽  
Health Related Quality ◽  
Quality Of Life Scale ◽  
Related Quality ◽  
Health Related ◽  
Poor Outcomes

AbstractThe health-related quality of life (HRQoL) of survivors of congenital diaphragmatic hernia (CDH) is presently unknown. Literature prior to 2015 suggests that CDH survivors have worse HRQoL compared with the general population. However, due to changes in the diagnosis, management, and follow-up of CDH patients, this may no longer be true. The objective of this review was to determine what recent literature suggests regarding the HRQoL of CDH survivors. We reviewed all studies published between April 9, 2015, and April 6, 2020, that described the HRQoL of CDH survivors. Studies were identified using PubMed, and the references of the identified papers were searched for additional studies eligible for inclusion. Seven studies describing HRQoL in CDH survivors using validated measures of HRQoL for children, PedsQL (Pediatric Quality of Life Inventory), KIDSCREEN-52, and Comprehensive Quality of Life Scale – School Version were examined. The findings were disparate. One study suggested that CDH survivors had better than average HRQoL scores, three studies found patients and controls had equivalent scores, and two studies reported poor outcomes for CDH patients. The final study found no effect of disease severity on HRQoL, as determined by prenatal ultrasound. Evidence published between 2015 and 2020 suggests that CDH patients have an HRQoL equivalent to the general population.

scholarly journals Seasonality, Epidemiology and Outcome of Congenital Diaphragmatic Hernia in South West of Iran

2017 ◽  
Vol 6 (2) ◽  
pp. 28 ◽  
Author(s):  
Masoud Dehdashtian ◽  
Shiva Bashirnejad ◽  
Arash Malekian ◽  
Mohammad Reza Aramesh ◽  
Mohammad Hasan Aletayeb
Keyword(s):  
Risk Factors ◽  
Intensive Care Unit ◽  
Intensive Care ◽  
Seasonal Variation ◽  
Mortality Rate ◽  
Congenital Diaphragmatic Hernia ◽  
Diaphragmatic Hernia ◽  
Neonatal Intensive Care ◽  
South West ◽  
Very High

Introduction: The pathogenesis of congenital diaphragmatic hernia (CDH) is not clear. Risk factors including environmental factors have been implicated in the pathogenesis of few congenital anomalies. We aimed to assess the effect of season on the incidence of CDH and mortality rate in the southwest of Iran.Material and Methods: In this retrospective study, the records of 60 patients with CDH who were admitted at Neonatal Intensive Care Unit (NICU) of Imam Khomeini Hospital of Ahvaz, Iran were evaluated.Results: Assuming that all the neonates born with CDH in the region reach this hospital, overall CDH prevalence rate was 1.09 per 10 000 total births. Conceptions in spring and summer in this region had statistically significantly higher incidence of CDH. Survival rate in the series was 41.6%.Conclusion: Seasonal variation has impact on the incidence of CDH. Mortality rate in neonates with CDH is still very high.

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