Occupational engagement, fatigue, and upper and lower extremity abilities in persons with melorheostosis.
Journal
PM & R : the journal of injury, function, and rehabilitation
ISSN: 1934-1563
Titre abrégé: PM R
Pays: United States
ID NLM: 101491319
Informations de publication
Date de publication:
05 2023
05 2023
Historique:
revised:
14
03
2022
received:
01
09
2021
accepted:
30
03
2022
pmc-release:
01
05
2024
medline:
30
5
2023
pubmed:
12
4
2022
entrez:
11
4
2022
Statut:
ppublish
Résumé
Melorheostosis is a rare bone disorder with limited literature that describes the effect of this disease on functional and motor abilities. As part of a natural history study, four outcome measures were administered to better understand the burden this disease has on a person's ability to engage in basic and instrumental activities of daily living. To investigate the relationship between functional engagement, fatigue, and motor ability in patients with melorheostosis. Cross-sectional data gathered from a longitudinal natural history observational study. Rehabilitation department within a single institution. Forty-seven adult volunteers with melorheostosis were enrolled. Two participants were removed for failure to meet diagnosis eligibility. Thirty patients had lower extremity (LE) osteosclerotic bone lesions, 14 had upper extremity (UE) lesions, and one had lesions in both UEs and LEs. Not applicable. Activity Card Sort, Second Edition (ACS); Multi-Dimensional Fatigue Inventory; Lower Extremity Functional Scale; Upper Extremity Functional Index. On the ACS, high-demand leisure (HDL) activities were the least retained (p < .001). Of the activities rated most important, HDL activities were the most likely to have been given up (27%). General fatigue (μ = 11.8) and physical fatigue (μ = 11.0) were the two most limiting fatigue constructs. There were moderate negative correlations with HDL activities compared to physical fatigue (r = -0.524, p < .001) and reduced activity fatigue (r = -0.58, p = .001). LE lesions had a large effect on completing LE tasks (d = 0.95) and UE lesions had a medium effect on completing tasks involving the UE (d = 0.69). Patients with melorheostosis experience fatigue and low engagement in HDL activities. The results of this study underscore the importance of acknowledging activity domain, fatigue constructs, and lesion location to support and provide targeted evidence-based rehabilitative therapy. NCT02504879.
Identifiants
pubmed: 35403375
doi: 10.1002/pmrj.12817
pmc: PMC9548523
mid: NIHMS1797260
doi:
Banques de données
ClinicalTrials.gov
['NCT02504879']
Types de publication
Observational Study
Journal Article
Research Support, N.I.H., Intramural
Langues
eng
Sous-ensembles de citation
IM
Pagination
587-595Subventions
Organisme : Intramural NIH HHS
ID : ZID AR041180
Pays : United States
Informations de copyright
Published 2022. This article is a U.S. Government work and is in the public domain in the USA.
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