Hermansky-Pudlak Syndrome: A Bilingual Assessment of Quality and Readability of Online Health Information

Hermansky-Pudlak Syndrome (HPS), characterized by oculocutaneous albinism and a bleeding diathesis, is an autosomal recessive disorder particularly found in Puerto Ricans. The highest prevalence is noted in the northwest of Puerto Rico, where one in 1,800 individuals are affected. Due to its complex presentation and treatment regimen, health information must ideally be accessible, understandable, and of high quality. We selected three keyword phrases in English and three in Spanish that describe the disease in layman’s terms and entered them as prompts in a Google search to simulate patient-initiated searches. The first 20 websites for each of the six terms were analyzed for quality and readability utilizing a DISCERN instrument questionnaire and an online readability test tool, respectively. The results for the English terms yielded a mean general reliability of 72.8%, with the quality and reliability of treatment information at a mean of 37.4%. The average grade level (AGL) recommended for the English sites was 14, with academic and private/commercial sites scoring 15 and 13, respectively. For the Spanish keywords, the general mean reliability was 65.8%, and the treatment information mean score was 27.4%. The recommended AGL for Spanish websites was 16. Although information on HPS is readily available, our analysis suggests that the complexity of the content may be high, with extreme variations in quality. This phenomenon was observed in both languages. Our results highlight the need to provide understandable, simple, and reliable quality information in both languages for educational purposes.