A Novel Exercise Protocol for Individuals with Ehlers Danlos Syndrome: A Case Report

Laferrier, Justin Z.; Muldowney, Kevin; Muldowney, Kathleen

doi:10.4172/2165-7025.1000382

Cited by 2 publications

(1 citation statement)

References 9 publications

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“…The World Health Organization stated in 2005 that 80% of persons with disabilities were living in developing countries 1 . While technologies and materials used for prosthetic feet in industrialised countries exhibit biomechanics close to the anatomical foot, together with energy storage and return during the gait cycle, the demand for appropriate and affordable advanced prosthetic feet is also growing rapidly in low- and middle-income countries and there are currently very few products available on the market intended to address this need 2 .…”

Section: Introductionmentioning

confidence: 99%

ISPO 17th World Congress Abstract Book

2019

Prosthet Orthot Int

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Background The Australian Orthotic Prosthetic Association (AOPA) regulates the profession of orthotist/prosthetists in Australia through the establishment, maintenance and application of professional standards, such as competency standards. While portfolios are commonly used to assess professional competency, little research has investigated how reliable these assessments are, or how reliability can be improved. Aim To evaluate how reliable AOPA's competency portfolio assessment is and examine causes of variation to improve reliability. Method Overseas trained practitioners wishing to have their qualifications and experience recognised by AOPA submitted a portfolio for assessment. Portfolios were randomly assigned to two independent assessors who determined whether the applicant's portfolio demonstrates competency against each of the 68 AOPA Competency Standards (2014) and recorded their determination as “satisfied” or “not satisfied”. An administrator collated the independent evaluations and identified any points of disagreement for discussion at a consensus meeting. To quantify interassessor reliability, the Kappa statistic was used for each of the 68 competency standards. To better understand the reasons for disagreement, semi-structured interviews were conducted with each assessor. Results Results from this study show high rates of agreement between assessors upon independent assessment. Points of disagreement were commonly resolved during the consensus meeting between assessors, disagreement was rare. The standards which experienced the highest rates of disagreement were identified. Discussion and Conclusion Evidence based standards should be supported by evidence-based processes. Competency assessment via a portfolio of evidence can be conducted and assessed by two assessors with high levels of agreement. Factors that may increase the reliability of the assessment include; appropriate assessor training, the presence of a consensus meeting and clear standards. There are opportunities to further improve the clarity of standards identified as having the lowest level of agreement.

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Section: Introductionmentioning

confidence: 99%

ISPO 17th World Congress Abstract Book

2019

Prosthet Orthot Int

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REPAIR-EDS: Rehabilitation Enhanced by Partial Arterial Inflow Restriction (REPAIR) in Eheler-Danlos Syndrome (EDS) Patients

Laferrier,

Mederios,

Shin

et al. 2024

JRPR

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The purpose of the current study was to test the effectiveness of combining blood flow restriction with standard physical therapy (PT BFR) exercises when compared to physical therapy exercises alone in a population of individuals living with Ehlers-Danlos Syndrome (EDS). EDS encompasses a complex spectrum of heritable connective tissue disorders characterized by genetic mutations affecting collagen synthesis and processing [1]. These mutations are inherited in varying patterns including autosomal dominant, recessive, and de novo mutations and lead to joint hypermobility, dermal dysplasia, and tissue fragility among other symptoms [2,3]. The most recent EDS classifications comprise at least 14 subtypes [4], each presenting unique clinical features and severity levels, affecting an estimated prevalence of 1 in 600 to 1 in 900 individuals depending on subtype [4-6]. Depending on the subtype, the syndrome can significantly impact functional capacity, quality of life, and longevity due to chronic pain, neuromusculoskeletal deficits, and other associated complications [7-12].Historically, traditional therapeutic approaches for EDS, which include pain management, surgery, and rehabilitation aimed at correcting deficits and improving strength and joint stability, often fall short of achieving long-term efficacy [13]. This inadequacy necessitates exploration of innovative interventions capable of addressing the underlying muscle weakness and functional impairments characteristic of the syndrome.

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A Novel Exercise Protocol for Individuals with Ehlers Danlos Syndrome: A Case Report

Cited by 2 publications

References 9 publications

ISPO 17th World Congress Abstract Book

ISPO 17th World Congress Abstract Book

REPAIR-EDS: Rehabilitation Enhanced by Partial Arterial Inflow Restriction (REPAIR) in Eheler-Danlos Syndrome (EDS) Patients

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