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

Daniel Arvidsson, Jonatan Fridolfsson, Elke Schubert-Hjalmarsson, Mari Lundberg, Mats Börjesson

Journal: Pediatric rheumatology online journal 2025;23(1):69

PMID: 40629345

Free Full Text on BioMed Central View on PubMed

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.

Address: Institute of Neuroscience and Physiology, Department of Health and Rehabilitation, Section of Physiotherapy, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden. [email protected].; Department of Physiotherapy, Queen Silvia Children's Hospital, Sahlgrenska University Hospital, Region Västra Götaland, Gothenburg, Sweden. [email protected].; Center for Lifestyle Intervention, Department of Molecular and Clinical Medicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.; Department of Medicine, Geriatric and Acute Medicine, Sahlgrenska University Hospital, Region Västra Götaland, Gothenburg, Sweden.; Center for Health and Performance, Department of Food and Nutrition, and Sport Science, Faculty of Education, University of Gothenburg, Gothenburg, Sweden.; Pain in Motion (PAIN) Research Group, Department of Physiotherapy, Human Physiology and Anatomy, Faculty of Physical Education & Physiotherapy, Vrije Universiteit Brussel, Brussels, Belgium.; Department of Health Promoting Science, Sophiahemmet University, Stockholm, Sweden.; University of Gothenburg Centre for Person-Centred Care (GPCC), Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.

DOI: 10.1186/s12969-025-01124-0

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MeSH Terms: Adolescent, Female, Humans, Male, Accelerometry, Catastrophization, Ehlers-Danlos Syndrome, Exercise, Fatigue, Joint Instability, Quality of Life, Sedentary Behavior