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Assessment and Development of Online Educational Materials for Autosomal Dominant Leukodystrophy

Gosky, Michael (2021) Assessment and Development of Online Educational Materials for Autosomal Dominant Leukodystrophy. Master's Thesis, University of Pittsburgh. (Unpublished)

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Many individuals utilize online resources following a diagnosis to gain additional health information. Patients and caregivers alike in the rare disease community have shared their desire for more updated, patient-friendly online information. Autosomal Dominant Leukodystrophy (ADLD) is a rare, adult-onset demyelinating condition with symptoms typically presenting in the 4th to 6th decade of life. There is currently a limited amount of online educational resources about ADLD, and the material available varies in content and its technical nature is difficult for most readers to understand.
In this study online educational materials were assessed for readability and content. A survey was developed and shared with patients and caregivers to assess their experience in gathering information about ADLD from physicians, other healthcare professionals, and online. This survey also asked what information participants would like included in the development of educational materials. The survey was distributed through the ADLD Facebook page support group, and through an email list of individuals consented to be contacted for research purposes.
All resources evaluated were written above an 11th grade level and contained variable information on ADLD. A total of 33 participants responded to the survey. Most participants used the internet to find information about ADLD following a diagnosis. In addition to online resources, patients and caregivers utilized other resources such as physicians, and genetic counselors to learn more about ADLD, though no source was identified as being the most beneficial. Participants also indicated that they would prefer a fact sheet to be developed by physician(s), genetic counselors, researchers, or other patients to provide information on management, risks, and current research.
Based on survey responses, a fact sheet was developed. This study impacts public health as the development and use of updated, easily understood educational materials aids in patient and caregiver understanding, and may promote communication between patients, caregivers, and healthcare professionals.


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Item Type: University of Pittsburgh ETD
Status: Unpublished
CreatorsEmailPitt UsernameORCID
Gosky, Michaelmdg75@pitt.edumdg75
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Committee CoChairGrubs, Robin E.rgrubs@pitt.edurgrubs
Committee CoChairPadiath, Quasar S.qpadiath@pitt.eduqpadiath
Committee MemberFelter, Elizabeth M.emfelter@pitt.eduemfelter
Date: 11 May 2021
Date Type: Publication
Defense Date: 16 April 2021
Approval Date: 11 May 2021
Submission Date: 1 May 2021
Access Restriction: No restriction; Release the ETD for access worldwide immediately.
Number of Pages: 105
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: ADLD, Autosomal Dominant Leukodystrophy
Date Deposited: 11 May 2021 14:21
Last Modified: 11 May 2021 20:25


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