ArticleOrphanet journal of rare diseases2025
Consensus-based recommendations for the rehabilitation of children with arthrogryposis multiplex congenita: an integrated knowledge translation approach.
Article in Orphanet journal of rare diseases, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
What it found
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Who cites it
1 citing paper in PubMed.
- Management of Lower-Extremity Deformity in Arthrogryposis Multiplex Congentia: A Narrative Review.Medical science monitor : international medical journal of experimental and clinical research · 2026Review
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Authors and funding
18 authors.
Funding
Abstract
backgroundArthrogryposis multiplex congenita (AMC) is a group of rare disorders characterized by multiple joint contractures present at birth. Early rehabilitation is essential to minimize joint contractures and maximize autonomy and participation among individuals with AMC. However, there is little robust scientific evidence to inform best practice. This project aimed to develop consensus-based recommendations for the rehabilitation management of children with AMC in the following priority areas: early intervention and motor development, muscle and joint function, orthotics, mobility, participation in areas of life, pain, psychosocial wellbeing, and perioperative rehabilitation.
resultsThis multi-phase project used an integrated knowledge translation approach. Based on the results from scoping reviews on the priority areas identified for the rehabilitation of children with AMC, and a clinician survey describing current practices in AMC rehabilitation, three panels of expert clinicians in occupational therapy, physical therapy, orthopedics, physiatry, and social work, as well as people with lived experience and researchers from 10 countries developed consensus-based recommendations for rehabilitation, in concordance with the Grading of Recommendations, Assessment, Development and Evaluations framework (GRADE) criteria. A modified Delphi process was completed with a wider group of international AMC experts to revise and validate the recommendations (Round 1 = 41 and Round 2 = 37 experts). A five-member external review panel appraised the recommendations using the Appraisal of Guidelines for Research and Evaluation II (AGREE II) tool. The final 16 recommendations reached a mean agreement rate of 96.6% after two Delphi rounds. The overall quality was rated at 96.6% on the AGREE II tool. Interviews with clinicians and managers identified facilitators and barriers to implementation of the recommendations in practice using the Theoretical Domain Framework.
conclusionConsensus-based, expert validated recommendations for the rehabilitation of children with AMC were developed by a wide range of stakeholders, healthcare users and providers. The proposed recommendations are expected to contribute to improving child- and family-centered practice and health outcomes. Future work includes a knowledge translation strategy to promote sharing and implementation of the recommendations in practice.
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Registered trials
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