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Review Article
Physical activity and sleep in patients with hypermobile Ehlers–Danlos syndrome and patients with generalized hypermobility spectrum disorder
1 MSc, Department of Rehabilitation Sciences and Physiotherapy, Ghent University, Ghent, Belgium
2 PhD, Center for Medical Genetics, Ghent University Hospital, Ghent, Belgium
3 PhD, Department of Health Professions, Macquarie University, NSW, Australia
4 PhD, MD, Center for Medical Genetics, Ghent University Hospital, Ghent, Belgium
5 PhD, Department of Rehabilitation Sciences and Physiotherapy, Ghent University, Ghent, Belgium
6 PhD, Department of Rehabilitation Sciences, KU Leuven – University of Leuven, Leuven, Belgium; Department of Rehabilitation Sciences and Physiotherapy, Ghent University, Ghent, Belgium
Address correspondence to:
Marie Coussens
Campus Heymanslaan 10, 9000 Ghent,
Belgium
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Article ID: 100049D05MC2020
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How to cite this article
Coussens M, De Wandele I, Pacey V, Malfait F, De Craemer M, Demeyer H, Rombaut L, Calders P. Physical activity and sleep in patients with hypermobile Ehlers–Danlos syndrome and patients with generalized hypermobility spectrum disorder. Edorium J Disabil Rehabil 2020;6:100049D05MC2020.ABSTRACT
Aims: Research objectively evaluating physical activity (PA) and sleep in adults with hypermobile Ehlers–Danlos syndrome (hEDS) and generalized hypermobility spectrum disorder (G-HSD) is lacking. Furthermore, it is not clear to what extent frequently occurring symptoms in these patients are related to their PA and sleep. Therefore, a cross-sectional study was performed to objectively evaluate, and identify factors contributing to, PA and sleep in adults with hEDS and G-HSD.
Methods: Twenty female adults with hEDS, 23 with G-HSD, and 32 healthy controls participated. Physical activity and sleep were measured using two tri-axial ActiGraphs worn over seven consecutive days. Furthermore, questionnaires evaluating frequently occurring symptoms were completed. Regression analysis was performed to determine major contributors to PA and sleep.
Results: Daily step counts were significantly lower in both patient groups compared to the control (CTR) group (p<0.04) and to the recommended 7500 steps (p≤0.001). Other PA and sleep variables did not differ between the groups. In the hEDS group, body mass index and kinesiophobia were related to PA, explaining 53% of the variance in step counts. In the G-HSD group, 18.5% of the variance in step counts could be attributed to the variance in pain impact.
Conclusion: Adults with hEDS and G-HSD had lower step counts than healthy peers, which may be partially due to kinesiophobia and the impact of pain respectively. No differences in objectively measured sleep parameters were identified. Treatment focusing on fear-avoidance beliefs and pain relief could potentially increase daily step counts and benefit overall health in these patients.
Keywords: Hypermobile Ehlers–Danlos syndrome, Hypermobility spectrum disorder, Physical activity, Sleep
SUPPORTING INFORMATION
Acknowledgments
We would like to thank the patients with hEDS/G-HSD who participated in this study.
Author ContributionsMarie Coussens - Substantial contributions to conception and design, Acquisition of data, Analysis of data, Interpretation of data, Drafting the article, Revising it critically for important intellectual content, Final approval of the version to be published
Inge De Wandele - Substantial contributions to conception and design, Interpretation of data, Revising it critically for important intellectual content, Final approval of the version to be published
Verity Pacey - Analysis of data, Interpretation of data, Revising it critically for important intellectual content, Final approval of the version to be published
Fransiska Malfait - Substantial contributions to conception and design, Acquisition of data, Revising it critically for important intellectual content, Final approval of the version to be published
Marieke De Craemer - Analysis of data, Interpretation of data, Revising it critically for important intellectual content, Final approval of the version to be published
Heleen Demeyer - Analysis of data, Interpretation of data, Revising it critically for important intellectual content, Final approval of the version to be published
Lies Rombaut - Substantial contributions to conception and design, Interpretation of data, Revising it critically for important intellectual content, Final approval of the version to be published
Patrick Calders - Analysis of data, Interpretation of data, Final approval of the version to be published
Guaranter of SubmissionThe corresponding author is the guarantor of submission.
Source of SupportNone
Consent StatementWritten informed consent was obtained from the patient for publication of this article.
Data AvailabilityAll relevant data are within the paper and its Supporting Information files.
Conflict of InterestAuthors declare no conflict of interest.
Copyright© 2020 Marie Coussens et al. This article is distributed under the terms of Creative Commons Attribution License which permits unrestricted use, distribution and reproduction in any medium provided the original author(s) and original publisher are properly credited. Please see the copyright policy on the journal website for more information.
