Exploring physical activity patterns in adolescents with hypermobility spectrum disorder or hypermobile Ehlers-Danlos Syndrome

Abstract Background Pain and fatigue are cardinal symptoms in adolescents with Hypermobility Spectrum Disorder (HSD) and Hypermobile Ehlers-Danlos Syndrome (hEDS). Adolescents with HSD/hEDS are assumed to be less physically active as compared to healthy peers, possibly contributing to poorer health,...

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Main Authors: Elke Schubert-Hjalmarsson, Jonatan Fridolfsson, Daniel Arvidsson, Mats Börjesson, Mari Lundberg
Format: Article
Language:English
Published: BMC 2025-07-01
Series:Pediatric Rheumatology Online Journal
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Online Access:https://doi.org/10.1186/s12969-025-01124-0
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author Elke Schubert-Hjalmarsson
Jonatan Fridolfsson
Daniel Arvidsson
Mats Börjesson
Mari Lundberg
author_facet Elke Schubert-Hjalmarsson
Jonatan Fridolfsson
Daniel Arvidsson
Mats Börjesson
Mari Lundberg
author_sort Elke Schubert-Hjalmarsson
collection DOAJ
description Abstract Background Pain and fatigue are cardinal symptoms in adolescents with Hypermobility Spectrum Disorder (HSD) and Hypermobile Ehlers-Danlos Syndrome (hEDS). Adolescents with HSD/hEDS are assumed to be less physically active as compared to healthy peers, possibly contributing to poorer health, but objectively measured data are lacking. The primary study aim was to investigate physical activity patterns (daytime and nighttime movement behavior) using accelerometers in adolescents with HSD/hEDS versus a control group. The secondary aim was investigation of any association between fatigue and movement behavior, acknowledging pain catastrophizing as a confounder. Methods Thirty-seven adolescents with HSD/hEDS and 45 healthy adolescents (aged 13–17 years) participated. Physical activity was measured with Axivity AX3 triaxial accelerometer and an activity-sleep diary was used for assessing time in bed. Fatigue was assessed with the Pediatric Quality of Life Inventory - Multidimensional Fatigue Scale and pain catastrophizing with the Pain Catastrophizing Scale for children. Results Adolescents with HSD/hEDS spent significantly more time in sedentary behavior (SED), less time in moderate-to-vigorous physical activity (MVPA) and exhibited significantly more sleep movement during night compared to the control group. An association between fatigue and SED, MVPA daytime or sleep movement in adolescents with HSD/hEDS, with pain catastrophizing as confounder, could not be confirmed. Conclusion According to this study, adolescents with HSD/hEDS exhibited physical activity behaviors at levels that are associated to poorer health compared to healthy peers. Measures need to be taken to design health promoting programs for these adolescents, including physical activity and sleep health, using a biopsychosocial approach that considers physical, psychological, and social factors. Clinical Trial Registration linicalTrials.gov PRS: Protocol Section NCT05633225.
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spelling doaj-art-7b4d86cbb11948dc9b7c1f7552649e4e2025-08-20T03:04:26ZengBMCPediatric Rheumatology Online Journal1546-00962025-07-012311910.1186/s12969-025-01124-0Exploring physical activity patterns in adolescents with hypermobility spectrum disorder or hypermobile Ehlers-Danlos SyndromeElke Schubert-Hjalmarsson0Jonatan Fridolfsson1Daniel Arvidsson2Mats Börjesson3Mari Lundberg4Institute of Neuroscience and Physiology, Department of Health and Rehabilitation, Section of Physiotherapy, Sahlgrenska Academy, University of GothenburgCenter for Lifestyle Intervention, Department of Molecular and Clinical Medicine, Sahlgrenska Academy, University of GothenburgCenter for Health and Performance, Department of Food and Nutrition, and Sport Science, Faculty of Education, University of GothenburgCenter for Lifestyle Intervention, Department of Molecular and Clinical Medicine, Sahlgrenska Academy, University of GothenburgPain in Motion (PAIN) Research Group, Department of Physiotherapy, Human Physiology and Anatomy, Faculty of Physical Education & Physiotherapy, Vrije Universiteit BrusselAbstract Background Pain and fatigue are cardinal symptoms in adolescents with Hypermobility Spectrum Disorder (HSD) and Hypermobile Ehlers-Danlos Syndrome (hEDS). Adolescents with HSD/hEDS are assumed to be less physically active as compared to healthy peers, possibly contributing to poorer health, but objectively measured data are lacking. The primary study aim was to investigate physical activity patterns (daytime and nighttime movement behavior) using accelerometers in adolescents with HSD/hEDS versus a control group. The secondary aim was investigation of any association between fatigue and movement behavior, acknowledging pain catastrophizing as a confounder. Methods Thirty-seven adolescents with HSD/hEDS and 45 healthy adolescents (aged 13–17 years) participated. Physical activity was measured with Axivity AX3 triaxial accelerometer and an activity-sleep diary was used for assessing time in bed. Fatigue was assessed with the Pediatric Quality of Life Inventory - Multidimensional Fatigue Scale and pain catastrophizing with the Pain Catastrophizing Scale for children. Results Adolescents with HSD/hEDS spent significantly more time in sedentary behavior (SED), less time in moderate-to-vigorous physical activity (MVPA) and exhibited significantly more sleep movement during night compared to the control group. An association between fatigue and SED, MVPA daytime or sleep movement in adolescents with HSD/hEDS, with pain catastrophizing as confounder, could not be confirmed. Conclusion According to this study, adolescents with HSD/hEDS exhibited physical activity behaviors at levels that are associated to poorer health compared to healthy peers. Measures need to be taken to design health promoting programs for these adolescents, including physical activity and sleep health, using a biopsychosocial approach that considers physical, psychological, and social factors. Clinical Trial Registration linicalTrials.gov PRS: Protocol Section NCT05633225.https://doi.org/10.1186/s12969-025-01124-0HypermobilityAdolescentPhysical activityEhlers-Danlos syndrome
spellingShingle Elke Schubert-Hjalmarsson
Jonatan Fridolfsson
Daniel Arvidsson
Mats Börjesson
Mari Lundberg
Exploring physical activity patterns in adolescents with hypermobility spectrum disorder or hypermobile Ehlers-Danlos Syndrome
Pediatric Rheumatology Online Journal
Hypermobility
Adolescent
Physical activity
Ehlers-Danlos syndrome
title Exploring physical activity patterns in adolescents with hypermobility spectrum disorder or hypermobile Ehlers-Danlos Syndrome
title_full Exploring physical activity patterns in adolescents with hypermobility spectrum disorder or hypermobile Ehlers-Danlos Syndrome
title_fullStr Exploring physical activity patterns in adolescents with hypermobility spectrum disorder or hypermobile Ehlers-Danlos Syndrome
title_full_unstemmed Exploring physical activity patterns in adolescents with hypermobility spectrum disorder or hypermobile Ehlers-Danlos Syndrome
title_short Exploring physical activity patterns in adolescents with hypermobility spectrum disorder or hypermobile Ehlers-Danlos Syndrome
title_sort exploring physical activity patterns in adolescents with hypermobility spectrum disorder or hypermobile ehlers danlos syndrome
topic Hypermobility
Adolescent
Physical activity
Ehlers-Danlos syndrome
url https://doi.org/10.1186/s12969-025-01124-0
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