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Analyzing Accessibility and Suitability of Online Krabbe Disease Resources

Zieber, Megan (2024) Analyzing Accessibility and Suitability of Online Krabbe Disease Resources. Master's Thesis, University of Pittsburgh. (Unpublished)

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Between 25 and 30 million Americans are affected by rare diseases. Krabbe disease (KD) is a neurodegenerative leukodystrophy affecting approximately 1 in 100,000 births in the United States. KD has been screened for in select states since 2006 but was recently suggested for addition to the Recommended Uniform Screening Panel. Following a diagnosis, parents frequent the internet to learn about specific medical conditions and necessary medical follow-up. Because disparities in management and prognosis are often associated with health literacy levels, patient education materials (PEMs) must be accessible to their intended audiences. This study aimed to assess the accessibility and suitability of online KD resources, using results to provide recommendations for resource improvement.
A Google search was conducted utilizing common search terms parents may use to identify patient-centered online KD resources. Twelve online KD resources were analyzed. These resources were compared against an author-developed list of essential information for patients and families. Readability was assessed using the Flesch-Kincaid Reading Grade Level and the Simple Measure of Gobbledygook Reading Grade Level, available through Suitability was measured by two reviewers utilizing the Suitability Assessment of Materials (SAM) Tool and the Patient Education Materials Assessment Tool (PEMAT) to reach a consensus assessment for each resource. Resources were classified as ‘superior’, ‘adequate’, or ‘not suitable’ based on the SAM Tool and rated on understandability and actionability using the PEMAT.
Most selected resources had readability grade levels above the recommended sixth to eighth grade reading levels for PEMs, ranging from 7.4 to 14.6. Eleven out of twelve (91.7%) resources were rated as ‘adequate’ or higher using the SAM Tool. PEMAT understandability scores ranged from 55.05% to 94.12%, and actionability scores ranged from 0% to 83.33%.
While resources were easy to navigate, they struggled using common language to make the information understandable to the broader population, utilizing graphics appropriately, and promoting interactivity and presenting concrete next steps based on given information. Future resource development should focus on implementing action steps parents can take after diagnosis and improving readability by using common terminology and graphics to increase understanding.


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Item Type: University of Pittsburgh ETD
Status: Unpublished
CreatorsEmailPitt UsernameORCID
Zieber, Meganmez89@pitt.edumez890000-0001-6142-7604
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Thesis AdvisorDurst, Andreaadurst@pitt.eduadurst
Committee MemberFelter, Elizabethemfelter@pitt.eduemfelter
Committee MemberRajan,
Committee MemberBrackbill,
Date: 14 May 2024
Date Type: Publication
Defense Date: 12 April 2024
Approval Date: 14 May 2024
Submission Date: 22 April 2024
Access Restriction: 1 year -- Restrict access to University of Pittsburgh for a period of 1 year.
Number of Pages: 72
Institution: University of Pittsburgh
Schools and Programs: School of Public Health > Genetic Counseling
Degree: MS - Master of Science
Thesis Type: Master's Thesis
Refereed: Yes
Uncontrolled Keywords: readability, suitability, health literacy, Krabbe, accessibility
Date Deposited: 14 May 2024 19:00
Last Modified: 14 May 2024 19:00


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