Assessing the availability and quality of Spanish-language genetic resources for patients on the internet

Abstract

In recent years, people increasingly are accessing health information on the Internet. A significant percentage of the United States (US) population has limited English proficiency with Spanish being the most common other language spoken. There is limited research on the presence or quality of Spanish-language health information, particularly in genetics, on the Internet overall. Therefore, we aimed to assess the availability and quality of patient-specific education resources in Spanish available on US-based support group websites for a wide range of genetic conditions. We assessed 630 websites through the Disease InfoSearch website (www.diseaseinfosearch.org), created by Genetic Alliance, for the presence of Spanish genetic resources for patients with a new diagnosis of a genetic condition. Of these, 261 (41.4%) websites met study criteria for further evaluation. Of the 99 websites (37.9%) that had any Spanish content, 45 Spanish resources and a paired English resource from the same site met criteria for a quality assessment. Scoring was performed by two independent raters using Ensuring Quality Information for Patients (EQIP), a previously validated tool to assess the quality of written health information. The mean scores for Spanish and English resources were 57.3% and 58.4%, respectively, corresponding to a good quality score according to guidelines proposed by authors of EQIP. An independent two-sample t test showed no significant difference in the mean quality scores between Spanish and English resources (p-value = .506). Overall, we found limited availability of Spanish resources on the websites analyzed, but of those identified, there was no difference between the quality of Spanish resources and the paired English resources from the same site. These results highlight the need for genetics professionals to advocate for the creation of more Spanish patient resources. However, genetics professionals can have some reassurance that if a support group does produce a Spanish resource, it likely has comparable quality to its English equivalent.

Keywords: Spanish; communication; disparities; diversity; genetic resources; internet resources; patient information; quality; underrepresented populations.