Document Type
Article
Publication Date
12-30-2024
Identifier
DOI: 10.1186/s13023-024-03517-y; PMCID: PMC11684232
Abstract
INTRODUCTION: After diagnosis of Ehlers Danlos Syndrome (EDS), it is unclear what information patients and parents need and understand about EDS. The objective of this study is to characterize patient and parent knowledge and concerns about EDS after a diagnosis of EDS is made to determine patient and parent concerns and identify barriers that cause discomfort with the diagnosis.6 METHODS: A convenience sample of patient and parent dyads were recruited after new diagnosis of EDS. Patients and parents completed questionnaires that assessed knowledge, comfort, and barriers of EDS before and after diagnosis, EDS education materials accessed, and additional clinical needs and concerns.
RESULTS: Seventy-two dyads completed the survey.
CONCLUSION: Many respondents actively seek information on the diagnosis and management of EDS. Parents and patients look for information about EDS differently. Parents have more concerns after diagnosis and both want well-constructed, empirically supported educational materials delivered via multiple modalities, which makes clinical guidelines more essential.
Journal Title
Orphanet J Rare Dis
Volume
19
Issue
1
First Page
493
Last Page
493
MeSH Keywords
Humans; Ehlers-Danlos Syndrome; Female; Parents; Male; Adult; Surveys and Questionnaires; Health Knowledge, Attitudes, Practice; Adolescent; Young Adult; Middle Aged; Child
PubMed ID
39736684
Keywords
Barriers; Concerns; Education; Ehlers Danlos syndrome; Patient and parent knowledge
Recommended Citation
Jones JT, Black LL, Black WR. Patient and parent knowledge, understanding, and concerns after a new diagnosis of Ehlers Danlos syndrome. Orphanet J Rare Dis. 2024;19(1):493. Published 2024 Dec 30. doi:10.1186/s13023-024-03517-y
Comments
Grants and funding
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Publisher's Link: https://ojrd.biomedcentral.com/articles/10.1186/s13023-024-03517-y