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Adults with Loeys-Dietz syndrome and vascular Ehlers-Danlos syndrome: a cross-sectional study of patient experiences with physical activity.
- Source :
- Disability & Rehabilitation; May2022, Vol. 44 Issue 10, p1968-1975, 8p
- Publication Year :
- 2022
-
Abstract
- To study patient experiences with physical activity among persons with Loeys-Dietz- or vascular Ehlers-Danlos syndrome. A postal questionnaire survey in 2018. Seventy adults with molecularly verified Loeys-Dietz syndrome types 1-4, or vascular Ehlers-Danlos syndrome recruited through a National Resource Centre for Rare Disorders in Norway. The response rate was 74%, (Loeys-Dietz n = 34, vascular Ehlers-Danlos n = 18), aged 18 to 68 years, 58% women. In total, 88.5% reported they had received advice regarding physical activity and most (77%) had modified their habits. Fifty percent had an appropriate- and 40% a low mean physical activity sum score. Another 10% had too high physical activity levels due to high intensity scores. Lower scores with the Fatigue Severity Scale (p = 0.033) and the anxiety subscale of the Hospital Anxiety and Depression Scale (p = 0.021), were associated with high physical activity levels. About a third reported unmet rehabilitation needs. Many adults with Loeys-Dietz- or vascular Ehlers-Danlos syndrome may have a potential to reach more favorable physical activity levels by increasing the frequency and duration of activities. Future directions should include evaluation of effects of professional-led practical and safe physical activity sessions as well as customized multidisciplinary rehabilitation programs for these patient groups. [ABSTRACT FROM AUTHOR]
- Subjects :
- EHLERS-Danlos syndrome
CROSS-sectional method
AGE distribution
ONE-way analysis of variance
LOEYS-Dietz syndrome
HABIT
REGRESSION analysis
EXPERIENCE
PHYSICAL activity
PSYCHOLOGICAL tests
SEX distribution
QUESTIONNAIRES
EMPLOYMENT
DESCRIPTIVE statistics
CHI-squared test
DATA analysis software
EDUCATIONAL attainment
Subjects
Details
- Language :
- English
- ISSN :
- 09638288
- Volume :
- 44
- Issue :
- 10
- Database :
- Complementary Index
- Journal :
- Disability & Rehabilitation
- Publication Type :
- Academic Journal
- Accession number :
- 157227932
- Full Text :
- https://doi.org/10.1080/09638288.2020.1815874