Longitudinal analysis of symptoms in the Ehlers-Danlos syndromes.
Ehlers-Danlos syndromes
longitudinal study
pain
Journal
American journal of medical genetics. Part A
ISSN: 1552-4833
Titre abrégé: Am J Med Genet A
Pays: United States
ID NLM: 101235741
Informations de publication
Date de publication:
04 2022
04 2022
Historique:
revised:
31
10
2021
received:
17
08
2021
accepted:
11
12
2021
pubmed:
8
1
2022
medline:
19
4
2022
entrez:
7
1
2022
Statut:
ppublish
Résumé
Our study extends a cross-sectional dataset on the Ehlers-Danlos syndromes (EDS) assembled by the National Institute on Aging (NIA), under a protocol entitled Clinical and Molecular Manifestations of Heritable Disorders of Connective Tissue. We were successful in contacting 171 of the original 252 participants with EDS. Our study cohort included 91 participants who completed at least one of the following surveys: Brief Pain Inventory (BPI), Pittsburgh Sleep Quality Index (PSQI), Multidimensional Fatigue Inventory (MFI-20), and Short Form (SF-36) Health Survey, at both baseline and follow-up. Follow-up surveys occurred a median of 11.6 years after the baseline survey. We used mixed effects linear regression models to examine the change in scores for multiple indices reported by participants. There were small mean changes reflected in our estimates for the EDS population as a whole. There was wide heterogeneity between reported individual experiences, with some participants markedly improved and some dramatically worse. Men had a greater increase in mean pain severity over time than women. This is the first study to report a decade of longitudinal data in EDS.
Identifiants
pubmed: 34994522
doi: 10.1002/ajmg.a.62640
pmc: PMC10433231
mid: NIHMS1924019
doi:
Types de publication
Journal Article
Research Support, N.I.H., Extramural
Research Support, N.I.H., Intramural
Langues
eng
Sous-ensembles de citation
IM
Pagination
1204-1213Subventions
Organisme : NCATS NIH HHS
ID : UL1 TR002014
Pays : United States
Informations de copyright
© 2022 Wiley Periodicals LLC.
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