Orthopaedic management of the Ehlers–Danlos syndromes

Ericson, William B.; Wolman, Roger

doi:10.1002/ajmg.c.31551

Cited by 70 publications

(57 citation statements)

References 21 publications

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“…Clinical studies are necessary to improve the general understanding of EDS and help symptoms management and disability prevention. Some papers mention the convenience of complex musculoskeletal problems being addressed by a multidisciplinary team approach, including a variety of specialists, but none of them include podiatrists [12,42]. This study could contribute to the inclusion of foot specialists in multidisciplinary teams who can try a new approach for patients with EDS.…”

Section: Discussionmentioning

confidence: 99%

“…Previous research has been done on physical therapies for lower limb symptoms in children diagnosed of EDS, with unclear results [11]. Specifically, regarding orthopedic management of EDS, some recommendations have been reported, such as splints or orthotics/arch supports [12,13], but no clinical studies exist that address the effectiveness of orthopaedic treatment for foot problems. Therefore, the aim of this study was to describe the effects of custom-made foot orthotics on some EDS-related manifestations, such as foot pain, foot functionality, chronic fatigue, and quality of life.…”

Section: Introductionmentioning

confidence: 99%

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Custom-Made Foot Orthoses Reduce Pain and Fatigue in Patients with Ehlers-Danlos Syndrome. A Pilot Study

Reina-Bueno

Vázquez-Bautista

Palomo-Toucedo

et al. 2020

IJERPH

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Background: Pain and fatigue are major clinical manifestations in patients with Ehlers-Danlos Syndrome (EDS). The aim of this study is to measure change of the effects of custom-made foot orthotics on some manifestations related to EDS, such as foot pain, foot functionality, fatigue, and quality of life. Methods: Thirty-six patients with EDS wore foot orthoses for three months. Foot pain, foot-related disability, foot functionality, fatigue, and quality of life were measured using the 11-point Numeric Rating Scale, the Manchester Foot Pain and Disability Index, the Foot Function Index, the Fatigue Severity Score, and the 12-Item Short Form Health Survey questionnaires, respectively, at the beginning and after 3 months. Results: Participants demonstrated significantly improved foot pain (p = 0.002), disability related to foot pain (p < 0.001), foot functionality (p = 0.001), fatigue (p < 0.007), and mental health-related quality of life (p = 0.016). The physical health-related quality of life did not show significant changes. Conclusions: The use of custom-made foot orthoses help in the management of the symptoms by participants. This study could contribute to the foot specialists being considered as an additional member in multidisciplinary teams that are trying to develop an approach for patients with EDS.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Custom-Made Foot Orthoses Reduce Pain and Fatigue in Patients with Ehlers-Danlos Syndrome. A Pilot Study

Reina-Bueno

Vázquez-Bautista

Palomo-Toucedo

et al. 2020

IJERPH

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“…As is often seen in many other musculoskeletal chronic pain conditions, the pain is most often at the insertion site. See also “Role of Orthopedic Management in the Ehlers‐Danlos Syndromes,” this issue [Ericson and Wolman, ].…”

Section: Literature Reviewmentioning

confidence: 99%

Pain management in the Ehlers–Danlos syndromes

Chopra¹,

Tinkle²,

Hamonet³

et al. 2017

American J of Med Genetics Pt C

140

172

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Chronic pain in the Ehlers–Danlos syndromes (EDS) is common and may be severe. According to one study, nearly 90% of patients report some form of chronic pain. Pain, which is often one of the first symptoms to occur, may be widespread or localized to one region such as an arm or a leg. Studies on treatment modalities are few and insufficient to guide management. The following is a discussion of the evidence regarding the underlying mechanisms of pain in EDS. The causes of pain in this condition are multifactorial and include joint subluxations and dislocations, previous surgery, muscle weakness, proprioceptive disorders, and vertebral instability. Affected persons may also present with generalized body pain, fatigue, headaches, gastrointestinal pain, temporomandibular joint pain, dysmenorrhea, and vulvodynia. Pain management strategies may be focused around treating the cause of the pain (e.g., dislocation of a joint, proprioceptive disorder) and minimizing the sensation of pain. Management strategies for chronic pain in EDS includes physical therapy, medications, as well as durable medical equipment such as cushions, compressive garments, and braces. The different modalities are discussed in this paper. © 2017 Wiley Periodicals, Inc.

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“…These factors can contribute to a delay in diagnosis and treatment, with some pediatric cohorts studied reporting 2–3 years from symptom onset to intervention (Adib, Davies, Grahame, Woo, & Murray, ). Management guidelines for adults with hEDS/HSD focus on symptomatic treatment with physical therapy and other interventions, with the goal to improve daily function and to prevent deconditioning (Chopra et al, ; Engelbert et al, ; Ericson & Wolman, ; Hakim, O'Callaghan, et al, ). However, there is no consensus for treatment of hEDS/HSD manifestations in the pediatric population, or which aspects of management to target to optimize quality of life.…”

Section: Introductionmentioning

confidence: 99%

Factors affecting quality of life in children and adolescents with hypermobile Ehlers‐Danlos syndrome/hypermobility spectrum disorders

Muriello

Clemens

et al. 2019

American J of Med Genetics Pt A

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Hypermobile Ehlers‐Danlos syndrome (hEDS) is a hereditary disorder of connective tissue, often presenting with complex symptoms can include chronic pain, fatigue, and dysautonomia. Factors influencing functional disability in the pediatric hEDS population are incompletely studied. This study's aims were to assess factors that affect quality of life in children and adolescents with hEDS. Individuals with hEDS between the ages 12–20 years and matched parents were recruited through retrospective chart review at two genetics clinics. Participants completed a questionnaire that included the Pediatric Quality of Life Inventory (PedsQL™), PedsQL Multidimentional Fatigue Scale, Functional Disability Inventory, Pain‐Frequency‐Severity‐Duration Scale, the Brief Illness Perception Questionnaire, measures of anxiety and depression, and helpful interventions. Survey responses were completed for 47 children and adolescents with hEDS/hypermobility spectrum disorder (81% female, mean age 16 years), some by the affected individual, some by their parent, and some by both. Clinical data derived from chart review were compared statistically to survey responses. All outcomes correlated moderately to strongly with each other. Using multiple regression, general fatigue and pain scores were the best predictors of the PedsQL total score. Additionally, presence of any psychiatric diagnosis was correlated with a lower PedsQL score. Current management guidelines recommend early intervention to prevent disability from deconditioning; these results may help identify target interventions in this vulnerable population.

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Orthopaedic management of the Ehlers–Danlos syndromes

Cited by 70 publications

References 21 publications

Custom-Made Foot Orthoses Reduce Pain and Fatigue in Patients with Ehlers-Danlos Syndrome. A Pilot Study

Custom-Made Foot Orthoses Reduce Pain and Fatigue in Patients with Ehlers-Danlos Syndrome. A Pilot Study

Pain management in the Ehlers–Danlos syndromes

Factors affecting quality of life in children and adolescents with hypermobile Ehlers‐Danlos syndrome/hypermobility spectrum disorders

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