Kandel, Caitlyn S
(2024)
hEDS and HSD Patient Educational Materials and Resources: Patient Experiences and Needs, and the Availability and Accessibility of Information.
Master's Thesis, University of Pittsburgh.
(Unpublished)
Abstract
Patients with Hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD) often have a large symptom burden and face disjointed care based on their symptoms, with the majority of the coordination of care falling as a responsibility of patients. Patients feel a lack of education on how to manage their symptoms and have highlighted a need for educational materials and resources to aid in their care. This project aimed to assess hEDS and HSD patients’ experiences with educational materials and resources as an informative assessment for the future creation of a resource guide to be given to hEDS and HSD patients following a diagnosis.
A survey was developed with the Primary Care Precision Medicine Clinic (PCPM) and distributed to PCPM patients who had undergone genetic testing for connective tissue disorders through a mailed letter. All participants of this study had looked for information on their diagnosis in the past. hEDS and HSD patients, in general, had similar resource usage, however there were differences noted between how often hEDS and HSD patients looked for information, with hEDS patients looking for information more often (p = 0.0014). There were additional differences in the medians of patients’ reported ability to find resources (p = 0.014) and ability to understand information in resources (p = 0.016), with HSD patients noting stronger agreement. This study found a correlation between patient educational attainment and understanding of resources (t-test p = 0.044; Wilcoxon sign-rank test p = 0.0076). hEDS and HSD patients noted a need and want for providers who were familiar with hEDS and HSD, as well as a need for more informational resources to utilize following a diagnosis.
This study highlighted a need for provider education on hEDS and HSD to improve care following a diagnosis. This study will inform the creation of an inclusive and accessible resource guide for patients following a diagnosis. This is important to public health and genetic counseling as care for hEDS and HSD can be improved with increased education of providers and more accessible information for patients.
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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: |
16 May 2024 |
| Date Type: |
Publication |
| Defense Date: |
25 March 2024 |
| Approval Date: |
16 May 2024 |
| Submission Date: |
18 April 2024 |
| Access Restriction: |
1 year -- Restrict access to University of Pittsburgh for a period of 1 year. |
| Number of Pages: |
92 |
| 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: |
Ehlers-Danlos, Hypermobility, hEDS, Resources, Readability |
| Date Deposited: |
16 May 2024 19:59 |
| Last Modified: |
16 May 2024 19:59 |
| URI: |
http://d-scholarship.pitt.edu/id/eprint/46171 |
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