Exploring physical activity patterns in adolescents with hypermobility spectrum disorder or hypermobile Ehlers-Danlos Syndrome,2025,Schubert-Hjalmar+

[SNT Gatchaman]

Exploring physical activity patterns in adolescents with hypermobility spectrum disorder or hypermobile Ehlers-Danlos Syndrome
Schubert-Hjalmarsson, Elke; Fridolfsson, Jonatan; Arvidsson, Daniel; Börjesson, Mats; Lundberg, Mari

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.

Link | PDF | Pediatric Rheumatology [Open Access]

 

[SNT Gatchaman]

In the general population, there is a clear link between movement behavior and fatigue, as well as with various indicators of health. Perceived fatigue in adults with different medical conditions is influenced by catastrophizing thoughts. Pain catastrophizing is related to increased pain and disability in both children and adults.

The primary aim of the study was to investigate daytime and nighttime movement behaviour using accelerometers in adolescents with HSD/hEDS compared to a control group. The secondary aim was to investigate the association between fatigue and daytime and nighttime movement behaviour with pain catastrophizing as confounder.

The Pain Catastrophizing Scale for children (PCS-C) assesses catastrophic thoughts in children and adolescents with pain. It comprises 13 statements beginning with “When I have pain.“. The scale includes three subscales: rumination (4 statements), magnification (3 statements), and helplessness (6 statements). Responses range from 0 (not at all) to 4 (extremely), with scores ranging from 0 to 52. Higher scores indicate greater pain catastrophizing.

There was a significant difference between the groups, with the HSD/hEDS group perceiving more fatigue (lower PedsQL-F score) (p < 0.001) and more pain catastrophizing (higher PCS-C score) (p < 0.001).

The secondary aim was to investigate the association between fatigue, with pain catastrophizing as a confounder, and daytime or nighttime movement behaviour. Our study could not show an association between perceived fatigue and daytime or nighttime movement behaviour.

However, we could show a statistically significant correlation between fatigue and pain catastrophizing. Pain and fatigue have been put forward as a barrier for exercise in adults with HSD/hEDS, alongside with psychological factors.

In our study, we could not discern whether adolescents with HSD/hEDS, who have more sleep movements, reported higher levels of perceived fatigue. However, there could be other causes beyond sleep movements that may affect perceived fatigue.

Hmm, there could be other causes. Have you considered them? Oh you haven't.

We did not further investigate…

 

[Hutan]

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.

"Sick people move less than healthy people. Therefore the way to make the sick people healthy is to make them move more."

It's only a stone's throw in terms of logic from "Dead people move less than living people. Therefore, the way to make dead people live again is to prop them up in a chair, attach ropes to their arms and make them wave about."

It feels like these people missed something important in their primary education - something that that would have helped them with the whole correlation does not equal causation thing.