Assessing the Utility of a Patient-Facing Diagnostic Tool Among Individuals With Hypermobile Ehlers-Danlos Syndrome: Focus Group Study
The results provide insights on the perceived utility and value of the tool, including preferred phrasing, layout and design preferences, and tool accessibility. The participants expressed that the tool may improve the hEDS diagnostic odyssey and help educate providers about the diagnostic process.
Authors
- Katrina M. Romagnoli (ORCID: https://orcid.org/0000-0001-8473-2126)
- Jessica Goehringer
- Abigail Kosmin (ORCID: https://orcid.org/0009-0009-2682-4263)
- Natalie Laible (ORCID: https://orcid.org/0009-0008-7761-8876)
Institutions
- Magee-Womens Hospital (US)
- Genomic Health (United States) (US)
- Geisinger Health System (US)
- Sarah Lawrence College (US)
Publication Details
- Journal
- JMIR Formative Research
- Published
- 2024-09-26
- DOI
- https://doi.org/10.2196/49720
- Citations
- 1
- Primary Topic
- Connective tissue disorders research
- Type
- article
- Field-Weighted Citation Impact
- 0.55