Abstract
ObjectivesConsumers rely on online health information, particularly for unusual conditions. Disorders of Sex Development (DSD) are complex with some aspects of care controversial. Accurate web-based DSD information is essential for decision-making, but the quality has not been rigorously evaluated. The purpose of the present study was to assess the quality of online health information related to DSD presented by 12 pediatric institutions comprising the NIH-sponsored DSD-Translational Research Network (DSD-TRN).MethodsDSD-TRN sites identified team webpages, then we identified linked webpages. We also used each institution search engine to search common DSD terms. We assessed webpages using validated tools: the Simple Measure of Gobbledygook (SMOG) determined reading level, the Patient Education Materials Assessment Tool (PEMAT) evaluated content for understandability and actionability, and the DISCERN tool assessed treatment decision-making information (for hormone replacement and surgery). We developed a “Completeness” measure which assessed the presence of information on 25 DSD topics.ResultsThe SMOG reading level of webpages was at or above high-school grade level. Mean (SD) PEMAT understandability score for Team Pages and Team Links was 68% (6%); on average these pages met less than 70% of the understandability criteria. Mean (SD) PEMAT actionability score was 23% (20%); few patient actions were identified. The DISCERN tool determined that the quality of information related to hormone treatment and to surgery was poor. Sites’ webpages covered 12–56% of the items on our Completeness measure.ConclusionsQuality of DSD online content was poor, and would be improved by using a variety of strategies, such as simplifying word choice, using visual aids, highlighting actions patients can take and acknowledging areas of uncertainty. For complex conditions such as DSD, high-quality web-based information is essential to empower patients (and caregiver proxies), particularly when aspects of care are controversial.
Highlights
The internet is a primary source of health information for patients and families
We primarily focused on webpages identified by Disorders of Sex Development (DSD)-TRN sites as their “DSD Team Pages” to evaluate DSD-related information which consumers would presume had been vetted and approved by DSD specialists
The online content on one of the DSD-Translational Research Network (DSD-TRN) member websites was referenced negatively during proceedings for the California Senate Concurrent Resolution 110 which proposes to prohibit genital surgery in DSD conditions “until a time at which an individual can participate in the decision” [35]
Summary
Of the more than 80% of U.S adults who report using the internet (as of 2012), 72% indicate they have used it for online health information [1]. The incidence of DSD is estimated to range from 1:100 to approximately 1:4500–5000 live births (more precise incidence determination complicated by issues such as varying disorders being included in DSD incidence studies and variability in DSD nomenclature) [9,10,11], with some individual conditions quite rare. DSD are most frequently identified at birth because of atypical genital appearance or discordance between results of prenatal diagnostic testing and genital appearance at the time of delivery. Overview: DSD and Gender program C TP 1. Health topic: MGD Overview: DSD program Not codedb. Overview: DSD and DSD Program Mean SD Minimum. The most frequent action identified was related to contacting the team for information or for
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