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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 Marie Coussens1, Inge De Wandele2, Verity Pacey3, Fransiska Malfait4, Marieke De Craemer5, Heleen Demeyer6, Lies Rombaut2, Patrick Calders5 Affiliations: 1MSc, Department of Rehabilitation Sciences and Physiotherapy, Ghent University, Ghent, Belgium; 2PhD, Center for Medical Genetics, Ghent University Hospital, Ghent, Belgium; 3PhD, Department of Health Professions, Macquarie University, NSW, Australia; 4PhD, MD, Center for Medical Genetics, Ghent University Hospital, Ghent, Belgium; 5PhD, Department of Rehabilitation Sciences and Physiotherapy, Ghent University, Ghent, Belgium; 6PhD, Department of Rehabilitation Sciences, KU Leuven – University of Leuven, Leuven, Belgium; Department of Rehabilitation Sciences and Physiotherapy, Ghent University, Ghent, Belgium. Corresponding Author: Marie Coussens, Campus Heymanslaan 10, 9000 Ghent, Belgium; Email: Marie.Coussens@ ugent.be Received: 29 July 2020 Accepted: 01 October 2020 Published: 25 November 2020 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.

Physical activity and sleep in patients with hypermobile Ehlers–Danlos syndrome and patients with generalized hypermobility spectrum disorder