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Expert guidance for the rehabilitation of children with arthrogryposis: protocol using an integrated knowledge
Noémi Dahan-Oliel1,2, Sarah Cachecho3, Alicja Fąfara4
1Shriners Hospital for Children, Montreal, Canada.
Insights
This study aims to develop expert guidance for the rehabilitation of children with Arthrogryposis Multiplex Congenita (AMC). It addresses the scarcity of evidence to improve care for children with this rare condition.
Area of Science:
- Pediatric Rehabilitation
- Rare Diseases
- Clinical Practice Guidelines
Background:
- Arthrogryposis Multiplex Congenita (AMC) involves multiple joint contractures at birth, impacting daily activities and participation.
- Early rehabilitation is vital for children with AMC, but evidence-based practices are limited due to the condition's rarity.
- Stakeholder input highlighted key rehabilitation priorities for pediatric AMC.
Purpose of the Study:
- To provide expert guidance on assessing and treating children with AMC.
- To cover key areas including muscle/joint function, pain, mobility, self-care, participation, and psychosocial well-being.
- To bridge the gap in high-quality evidence for AMC rehabilitation.
Main Methods:
- An integrated knowledge translation approach.
- Clinician surveys to identify current rehabilitation practices.
- Scoping reviews and expert consensus (GRADE, Delphi) to develop guidance.
- AGREE II tool for guideline appraisal.
- Identification of implementation barriers and facilitators.
Main Results:
- Development of research-based, expert guidance for pediatric AMC rehabilitation.
- Consensus statements on assessment and treatment strategies.
- Identification of facilitators and barriers for guideline implementation.
Conclusions:
- This project will yield expert guidance for healthcare providers and users in AMC rehabilitation.
- The guidance aims to enhance family-centered care for children with AMC.
- It will contribute to improving autonomy and participation for children with AMC.
Background:
Arthrogryposis multiplex congenita (AMC) is a group of rare congenital disorders characterized by multiple joint contractures present at birth. Contractures can affect different body areas and impact activities of daily living, mobility and participation. Although early rehabilitation is crucial to promote autonomy and participation in children with AMC, empirical evidence to inform best practice is scarce and clinical expertise hard to develop due to the rarity of AMC. Preliminary research involving stakeholders in AMC (youth with AMC, parents, and clinicians) identified priorities in pediatric rehabilitation. Scoping reviews on these priorities showed a lack of high quality evidence related to rehabilitation in AMC. The objective of this project is to provide rehabilitation expert guidance on the assessment and treatment of children with AMC in the areas of muscle and joint function, pain, mobility and self-care, participation and psychosocial wellbeing.
Methods:
An integrated knowledge translation approach will be used throughout the project. Current rehabilitation practices in AMC will be identified using a clinician survey. Using the Grading of Recommendations, Assessment, Development and Evaluations framework (GRADE) approach, a panel of interdisciplinary expert clinicians, patient and family representatives, and researchers will develop expert guidance on the assessment and treatment for pediatric AMC rehabilitation based on findings from the scoping reviews and survey results. Consensus on the guidance statements will be sought using a modified Delphi process with a wider panel of international AMC experts, and statements appraised using the Appraisal of Guidelines for Research and Evaluation II (AGREE II) tool. Theoretical facilitators and barriers toward implementing clinical guidance into practice will be identified among rehabilitation clinicians and managers to inform the design of dissemination and implementation strategies.
Discussion:
This multi-phase project will provide healthcare users and providers with research-based, expert guidance for the rehabilitation of children with AMC and will contribute to family-centered practice.
