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

10.2196/30695 ◽  
2021 ◽  
Author(s):  
Frank Coyle Soltys ◽  
Kimi Spilo ◽  
Mary C Politi
Keyword(s):  
Congenital Diaphragmatic Hernia ◽  
Diaphragmatic Hernia ◽  
Online Information

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.

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 The current obstetrical and perinatal management of congenital diaphragmatic hernia

2021 ◽  
Vol 16 (S4) ◽  
pp. 21-26
Author(s):  
Bianca Mihaela DANCIU ◽  
◽  
Vlad DIMA ◽  
Dora BOGHIȚOIU ◽  
Ana Maria Alexandra STĂNESCU ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Congenital Diaphragmatic Hernia ◽  
Diaphragmatic Hernia ◽  
Research Data ◽  
Multidisciplinary Management ◽  
Severe Condition ◽  
Perinatal Management ◽  
Genetic And Environmental Factors

Congenital diaphragmatic hernia is a severe condition with an etiology and pathogenesis still been developed; also, the involvement of genetic and environmental factors in the occurrence of this malformation is under study. Morbi-mortality in these patients is high, and quality of life is diminished. Under these circumstances, careful follow-up of the pregnancy and multidisciplinary management after birth is needed to diagnose the malformation as early as possible and adapt the therapeutic plan to the particularities of each case. In conclusion, despite several research data in the literature concerning this topic, the management of newborn babies with congenital diaphragmatic hernia remains a severe challenge. The treatment of congenital diaphragmatic hernia remains the prerogative of overqualified teams.

Health‐related quality of life of caregivers of children with congenital diaphragmatic hernia

2021 ◽  
Author(s):  
Sahar Al Baroudi ◽  
Joseph M. Collaco ◽  
Melanie K. Nies ◽  
Jessica L. Rice ◽  
Eric B. Jelin
Keyword(s):  
Quality Of Life ◽  
Congenital Diaphragmatic Hernia ◽  
Diaphragmatic Hernia ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related
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