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Consensus-based recommendations for the rehabilitation of children with arthrogryposis multiplex congenita: an
Noémi Dahan-Oliel1,2, Sarah Cachecho3, Clarice Araujo1,2
1Shriners Hospital for Children-Canada, 1003, Boulevard Décarie, Montréal, QC, H4A 0A9, Canada.
Insights
Consensus-based recommendations for arthrogryposis multiplex congenita (AMC) rehabilitation were developed by experts and individuals with lived experience. These guidelines aim to improve early intervention, motor development, and overall health outcomes for children with AMC.
Area of Science:
- Rehabilitation Medicine
- Pediatric Physical Therapy
- Occupational Therapy
Background:
- Arthrogryposis multiplex congenita (AMC) involves multiple joint contractures at birth, necessitating early intervention.
- Robust scientific evidence for optimal AMC rehabilitation practices is limited.
- This project focused on developing evidence-based recommendations for key rehabilitation areas in AMC.
Purpose of the Study:
- To develop consensus-based recommendations for the rehabilitation management of children with AMC.
- To address priority areas including early intervention, motor development, joint function, mobility, participation, pain, psychosocial wellbeing, and perioperative care.
- To provide guidance for healthcare professionals and families managing AMC.
Main Methods:
- An integrated knowledge translation approach was employed, combining scoping reviews and a clinician survey.
- Expert panels, including clinicians, individuals with lived experience, and researchers, developed initial recommendations.
- A modified Delphi process with international experts and AGREE II appraisal validated the recommendations.
Main Results:
- Sixteen consensus-based recommendations for AMC rehabilitation were finalized with high expert agreement (96.6%).
- The recommendations achieved a high overall quality rating (96.6%) on the AGREE II tool.
- Facilitators and barriers to implementation were identified using the Theoretical Domain Framework.
Conclusions:
- Expert-validated recommendations for pediatric AMC rehabilitation have been established.
- These recommendations are expected to enhance child- and family-centered care and improve health outcomes.
- A knowledge translation strategy will be implemented to promote the adoption of these guidelines.
Background:
Arthrogryposis 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.
Results:
This 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.
Conclusion:
Consensus-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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