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

Authors

  • Laura I. Ortiz-López, MD Universidad Central del Caribe, Bayamón, PR, USA; Department of Dermatology, Brigham & Women's Hospital, Boston, MA, USA. Author
  • Karla M. Santiago-Soltero, MD Ponce Health Sciences University, Ponce, PR, USA; Department of Dermatology, Brigham & Women's Hospital, Boston, MA, USA. Author
  • Sofia Milosavljevic, BA Harvard Medical School, Boston, MA, USA; Department of Dermatology, Brigham & Women's Hospital, Boston, MA, USA. Author
  • Krithika Nayudu, BA Medical College of Georgia, Augusta, GA, USA; Department of Dermatology, Brigham & Women's Hospital, Boston, MA, USA. Author
  • Mihir K. Patil, BA Carle Illinois College of Medicine, University of Illinois Urbana-Champaign, Urbana, IL, USA; Department of Dermatology, Brigham & Women's Hospital, Boston, MA, USA. Author
  • Goranit Sakunchotpanit, BS Tufts University School of Medicine, Boston, MA, USA; Department of Dermatology, Brigham & Women's Hospital, Boston, MA, USA. Author
  • Rhea Malik Department of Dermatology, Brigham & Women's Hospital, Boston, MA, USA. Author
  • TJ Hazen, BA Harvard Medical School, Boston, MA, USA; Department of Dermatology, Brigham & Women's Hospital, Boston, MA, USA. Author
  • Stephanie Sánchez-Meléndez, MD Ponce Health Sciences University, Ponce, PR, USA; Department of Dermatology, Brigham & Women's Hospital, Boston, MA, USA. Author
  • Vinod E. Nambudiri, MD, MBA Harvard Medical School, Boston, MA, USA; Department of Dermatology, Brigham & Women's Hospital, Boston, MA, USA. Author

DOI:

https://doi.org/10.71332/vp3egj48

Keywords:

Hermansky-Pudlak Syndrome, Online Health Information, Albinism, Quality and Readability, Hispanic, Genodermatosis, Bilingual

Abstract

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.

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2025-07-14

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Vol. 1 No. 1 (2025): Ponce Health Sciences University Scientific Journal - First Issue

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