Related Experiment Video
Updated: Aug 14, 2025
Measurements of Motor Function and Other Clinical Outcome Parameters in Ambulant Children with Duchenne Muscular Dystrophy
Published on: January 12, 2019
Pain Characteristics and Symptom Management in Children with Hypermobile Ehlers-Danlos Syndrome and Hypermobility
Hyo-Jung Jeong1,2, Joyce M Engel2, Olivia Wilwert2
1Orthopaedic and Rehabilitation Engineering Center, Marquette University, Milwaukee, Wisconsin, USA.
Insights
Pediatric hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD) often involve bothersome pain, particularly in the ankles and back. Early awareness and management of pain are crucial for preventing long-term issues.
Area of Science:
- Pediatric rheumatology
- Clinical pain management
- Genetics and rare diseases
Background:
- Hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS) are increasingly recognized in pediatric populations.
- Pain is a significant and often debilitating symptom in children with hEDS/HSD, impacting daily life.
- Understanding pain characteristics and current management strategies is essential for effective pediatric care.
Purpose of the Study:
- To investigate the specific pain features experienced by children diagnosed with hEDS/HSD.
- To explore the management strategies employed for pediatric hEDS/HSD pain.
- To assess pain interference and psychological correlates in this population.
Main Methods:
- A mixed-methods, cross-sectional study involving 21 children with hEDS/HSD.
- Patient-reported outcomes including pain interference, functional disability, and psychological symptoms.
- Semi-structured interviews for children reporting bothersome pain to detail pain characteristics.
Main Results:
- Nineteen out of 21 children experienced bothersome pain, with eight reporting constant pain.
- Ankle and back pain were most frequently reported, with varying severity.
- Children reported mild-to-moderate pain interference and found medications beneficial; exercise and physician visits were common treatments.
Conclusions:
- Early identification and comprehensive management of pain in pediatric hEDS/HSD are vital.
- Addressing pain-related symptoms and treatment strategies in childhood can mitigate adult complications.
- Further research into optimal pain management protocols for pediatric hEDS/HSD is warranted.
Aims:
This study aims to investigate pediatric hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD) pain features and management strategies.
Methods:
This is a mixed-methods, cross-sectional study design using patient-reported outcomes in 21 children diagnosed with hEDS/HSD. Children who reported bothersome pain were interviewed for pain features. The Child Activity Limitation Interview-21, the Brief Pain Inventory pain interference items, and the Functional Disability Inventory were used to investigate pain interference. To evaluate psychological symptoms regarding pain, the pediatric version of the Survey of Pain Attitude and the child version of the Pain Catastrophizing Scale were used.
Results:
Nineteen children had bothersome pain and of them, eight children reported constant pain. The most frequently reported regions of pain were at the ankle (mild pain) and the back (moderate-to-severe pain). Children reported mild-to-moderate pain interference and believed medications were beneficial for their pain management. Nineteen children sought treatment and of those 16 children used to exercise and acetaminophen and 13 visited physicians as a means of treatment. Parents were overall satisfied with their child's treatment (13 out of 19).
Conclusions:
Sufficient awareness of pain-related symptoms and understanding of the treatment strategies in early childhood is needed to prevent deleterious consequences in adulthood.
More Related Videos
07:20Author Spotlight: Repetitive Transcranial Magnetic Stimulation Combined with Movement Observation in Cerebral Palsy
Published on: August 9, 2024
06:28Biomechanical Changes Related to Low Back Pain: An Innovative Tool for Movement Pattern Assessment and Treatment Evaluation in Rehabilitation
Published on: December 13, 2024
Related Concept Videos
01:29Cardiomyopathy III: Hypertrophic Cardiomyopathy
01:19Autism Spectrum Disorder
These core symptoms manifest differently among individuals, ranging from mild to severe. The disorder's complexity extends beyond its clinical presentation, encompassing a diverse range of biological, cognitive, and sociocultural influences.
01:21Peripheral Arterial Disease II: Clinical Manifestations and Diagnostic Evaluation
01:28Disorders of the Skeletal Muscle
Musculoskeletal disorders
Musculoskeletal disorders involve injuries and conditions affecting the skeletal muscles and associated connective tissues. These disorders can arise from acute biomechanical stresses or chronic overuse and can occur across different age groups. Common injuries include sprains, fractures, and muscular strains, often resulting from...
01:29Cardiomyopathy V: Interprofessional Care
01:26Esophageal Strictures-II: Clinical Features and Management
Healthcare providers should gather a comprehensive medical history and conduct a physical examination for diagnosis. If esophageal stricture is...