Soltys Frank Coyle, Spilo Kimi, Politi Mary C
Division of Newborn Medicine, Department of Pediatrics, Washington University School of Medicine, Washington University in St. Louis, St. Louis, MO, United States.
Division of Public Health Sciences, Department of Surgery, Washington University in St. Louis School of Medicine, St. Louis, MO, United States.
JMIR Pediatr Parent. 2021 Oct 19;4(4):e30695. doi: 10.2196/30695.
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.
We aimed to examine the content and quality of publicly available, internet-based CDH information.
We conducted internet searches across 2 popular search engines (Google and Bing). Websites were included if they contained CDH information and were publicly available. We developed a coding instrument to evaluate websites. Two coders (FS and KS) were trained, achieved interrater reliability, and rated remaining websites independently. Descriptive statistics were performed.
Searches yielded 520 websites; 91 met inclusion criteria and were analyzed. Most websites provided basic CDH information including describing the defect (86/91, 95%), need for neonatal intensive care (77/91, 85%), and surgical correction (79/91, 87%). Few mentioned palliative care, decisions about pregnancy termination (13/91, 14%), or support resources (21/91, 23%).
Findings highlight the variability of information about CDH on the internet. Clinicians should work to develop or identify reliable, comprehensive information about CDH to support parents.
婴儿先天性膈疝（CDH）的诊断会让父母感到痛苦。父母在产前咨询时往往觉得无法理解CDH的复杂性，因此会利用互联网来补充相关知识并辅助决策。
我们旨在研究公开可用的基于互联网的CDH信息的内容和质量。
我们在两个常用搜索引擎（谷歌和必应）上进行了互联网搜索。如果网站包含CDH信息且可公开获取，则将其纳入研究。我们开发了一种编码工具来评估网站。两名编码员（FS和KS）接受了培训，达到了评分者间的可靠性，并独立对其余网站进行评分。进行了描述性统计分析。
搜索共得到520个网站；91个符合纳入标准并进行了分析。大多数网站提供了基本的CDH信息，包括描述缺陷（86/91，95%）、新生儿重症监护的必要性（77/91，85%）和手术矫正（79/91，87%）。很少提及姑息治疗、终止妊娠的决策（13/91，14%）或支持资源（21/91，23%）。
研究结果凸显了互联网上CDH信息的多样性。临床医生应努力开发或确定关于CDH的可靠、全面的信息，以支持父母。
