June 2022
Volume 63, Issue 7
Open Access
ARVO Annual Meeting Abstract  |   June 2022
Readability, Suitability, and Quality of Online Health Information for Retinitis Pigmentosa & Retinitis Pigmentosa Treatment Options
Author Affiliations & Notes
  • Stacy Partin
    Human Genetics, Emory University School of Medicine, Atlanta, Georgia, United States
  • Eleanor Westfall
    Human Genetics, Emory University School of Medicine, Atlanta, Georgia, United States
    Children's Healthcare of Atlanta Inc, Atlanta, Georgia, United States
  • Gregory Sanda
    Emory University School of Medicine, Atlanta, Georgia, United States
  • Kelly Muir
    Ophthalmology, Duke University, Durham, North Carolina, United States
  • Kari Branham
    Kellog Eye Center, University of Michigan, Ann Arbor, Michigan, United States
  • Nieraj Jain
    Ophthalmology, Emory University School of Medicine, Atlanta, Georgia, United States
  • Footnotes
    Commercial Relationships   Stacy Partin None; Eleanor Westfall None; Gregory Sanda None; Kelly Muir None; Kari Branham None; Nieraj Jain Foundation Fighting Blindness, Code F (Financial Support)
  • Footnotes
    Support  Dr. Nieraj Jain receives funding from Foundation Fighting Blindness
Investigative Ophthalmology & Visual Science June 2022, Vol.63, 3383 – A0170. doi:
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    • Get Citation

      Stacy Partin, Eleanor Westfall, Gregory Sanda, Kelly Muir, Kari Branham, Nieraj Jain; Readability, Suitability, and Quality of Online Health Information for Retinitis Pigmentosa & Retinitis Pigmentosa Treatment Options. Invest. Ophthalmol. Vis. Sci. 2022;63(7):3383 – A0170.

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      © ARVO (1962-2015); The Authors (2016-present)

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Abstract

Purpose : New therapies for Retinitis Pigmentosa (RP) have led to patients desiring more information about the disease and treatment options. Because patients rely heavily on the internet to acquire health information, this cross sectional study was developed to assess the readability, suitability, and quality of online health information for RP and it’s associated treatment options.

Methods : We performed two distinct searches of freely available online information: one pertaining to RP and another pertaining to treatments for RP. To assess available information for RP we used the search term “Retinitis Pigmentosa” and evaluated the top 8 search hits. To assess the online information for RP treatment options, we used the search terms “Retinitis Pigmentosa Treatment”, “Retinitis Pigmentosa Cure”, and “Retinitis Pigmentosa Gene Therapy.” 10 websites were evaluated from these three search terms.

A readability analysis was conducted for all sources using Readable (Added Bytes; Horsham, PA). Five readability algorithms were used to produce an average reading grade level for each source. A suitability analysis was conducted to evaluate whether the sources contained content deemed significant for patient knowledge. To assess the quality of the sources, JAMA website quality benchmarks were used.

Results : The readability assessment of RP webpages showed a mean reading grade level of 11.99 (SD=3.15, 95% CI=10.98-12.99). For the RP Treatment sources, the mean reading grade level was found to be 12.53 (SD=3.08, 95% CI=11.65-13.40). The mean suitability score for RP sites was 21.25 of 32 possible points (SD=4.12, 95% CI: 19.51-22.99). The mean suitability score for RP treatment sites was 5.50 out of 16 possible points (SD=3.69 , 95% CI: 4.12-6.88). The interrater reliability was 0.973 (Chronbach’s alpha). For the RP sites, the average quality score was 2.63 out of 4 possible points (SD=0.92, 95% CI=1.86-3.39). For the RP Treatment sites, the average quality score was 2 out of 4 possible points (SD=0.86, 95% CI=1.42-2.58).

Conclusions : Our data suggest that the online information made available to patients regarding RP and RP treatment options exceeds the USDHHS recommended 6th grade reading level and contains gaps in content relevant to patients.

This abstract was presented at the 2022 ARVO Annual Meeting, held in Denver, CO, May 1-4, 2022, and virtually.

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