Bombal, Elizabeth
(2022)
Assessment and Development of Educational Resources for Hajdu-Cheney Syndrome.
Master's Thesis, University of Pittsburgh.
(Unpublished)
Abstract
Hajdu-Cheney Syndrome (HCS) is a rare, hereditary connective tissue disorder which causes osteoporosis and acro-osteolysis, among other symptoms. As this condition affects fewer than 100 individuals, it is not well studied and has few available patient-centered educational resources. Most online educational materials about HCS use complex terminology and none consistently cover the same information about HCS.
This study aimed to create a comprehensive, understandable resource for patients and families impacted by HCS by assessing current resources and surveying an online patient support group. The first part of this study assessed five online HCS educational materials for readability and content. Evaluated resources were written at 9th grade to college graduate reading levels, above the nationally recommended 6-8th grade reading level. Additionally, the resources were reviewed for five content areas. Resources varied widely in areas of content covered and most resources did not contain all areas that were assessed. Further, only two resources provided links for patient support.
Next, individuals and their family members were surveyed to elicit their experiences learning about HCS and their preferences regarding format and content for a HCS specific educational resource. The survey was distributed through a private HCS Facebook support group and a total of 29 individuals responded to the survey. All respondents reported using the internet to find information about HCS at some point. Eleven participants continue to look online for information about HCS at least once a month. Participants also reported relying on geneticists, genetic counselors, other healthcare professionals, scientific articles, and other affected individuals to get information.
Based on survey responses, a fact sheet was drafted including information about the cause, inheritance, features, and management of HCS. This study is significant to public health because although rare diseases are individually rare, they cumulatively affect millions of individuals. The development of clear, readable educational resources can promote better understanding of a diagnosis, which can increase feelings of empowerment and inform health care decisions for these many individuals.
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Details
| Item Type: |
University of Pittsburgh ETD
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| Status: |
Unpublished |
| Creators/Authors: |
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| ETD Committee: |
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| Date: |
30 August 2022 |
| Date Type: |
Publication |
| Defense Date: |
21 June 2022 |
| Approval Date: |
30 August 2022 |
| Submission Date: |
5 August 2022 |
| Access Restriction: |
No restriction; Release the ETD for access worldwide immediately. |
| Number of Pages: |
99 |
| 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: |
Evaluating online education materials for patients with a rare disorder |
| Date Deposited: |
30 Aug 2022 12:52 |
| Last Modified: |
30 Aug 2022 12:52 |
| URI: |
http://d-scholarship.pitt.edu/id/eprint/43540 |
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