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Observational Study
. 2025 Jul 8;23(1):69.
doi: 10.1186/s12969-025-01124-0.

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

Elke Schubert-Hjalmarsson  1   2 , Jonatan Fridolfsson  3   4 , Daniel Arvidsson  5 , Mats Börjesson  3   4 , Mari Lundberg  6   7   8
Affiliations
Observational Study

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

Elke Schubert-Hjalmarsson et al. Pediatr Rheumatol Online J. .

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.

Keywords: Adolescent; Ehlers-Danlos syndrome; Hypermobility; Physical activity.

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Conflict of interest statement

Declarations. Ethics approval and consent to participate: Ethical approval was obtained from the Swedish Ethical Review Authority (ref. no. 2019–03446, amendment application 2022-03780-02). Consent for publication: Not applicable. Competing interests: The authors declare no competing interests.

Figures

Fig. 1
Fig. 1
Flow diagram of participants
Fig. 2
Fig. 2
(a) Daytime physical activity pattern. (b): Nighttime physical activity pattern. Note: Figure 2a and b display the disparity in activity levels, separating daytime and nighttime. Positive values on the Y-axis indicate higher activity levels in the patient group, while negative values suggest higher activity levels in the control group. The solid line represents the median difference between the two groups, while the light blue and light orange areas represent the respective confidence interval (95%). Values are expressed in standard deviations
See this image and copyright information in PMC

References

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