The quality of online information about periviable birth (Preprint)

BACKGROUND: Over 20,000 parents in the United States face the challenge of participating in decisions about whether to use life support for their infants born on the cusp of viability every year. Clinicians must help families grasp complex medical information about their baby's immediate prognosis as well as the risk for significant long-term morbidity. Patients faced with this decision want supplemental information and frequently seek medical information on the Internet. Empirical evidence about the quality of websites is lacking. OBJECTIVE: We sought to evaluate the quality of online information available about periviable birth and treatment options for infants born at the cusp of viability. METHODS: We read a counseling script to 20 pregnant participants that included information typically provided by perinatal and neonatal providers when periviable birth is imminent. The women were then asked to list terms they would use to search the Internet if they wanted additional information. Using these search terms, two reviewers evaluated the content of websites obtained via a Google search. We used two metrics to assess the quality of websites. The first was the DISCERN instrument, a validated questionnaire designed to assess the quality of patient-targeted health information for treatment choices. The second metric was the Essential Content Tool (ECT), a tool designed to address key components of counseling around periviable birth as outlined by professional organizations. DISCERN scores were classified as low quality if scores were 2, fair quality if scores were 3, and high quality if scores were 4 or higher. Scores of 6 or higher on the ECT were considered high quality. Interreviewer agreement was assessed by calculated kappa statistic. RESULTS: A total of 97 websites were reviewed. Over half (57/97, 59%) were for-profit sites, news stories, or personal blogs; 28% (27/97) were government or medical sites; and 13% (13/97) were nonprofit or advocacy sites. The majority of sites scored poorly in DISCERN questions designed to assess the reliability of information presented as well as data regarding treatment choices. Only 7% (7/97) of the websites were high quality as defined by the DISCERN tool. The majority of sites did not address the essential content defined by the ECT. Importantly, only 18% of websites (17/97) indicated that there are often a number of reasonable approaches to newborn care when faced with periviable birth. Agreement was strong, with kappa ranging from .72 to .91. CONCLUSIONS: Most information about periviable birth found on the Internet using common search strategies is of low quality. News stories highlighting positive outcomes are disproportionately represented. Few websites discuss comfort care or how treatment decisions impact quality of life.