Purpose: To describe the current practices in rehabilitation for the evaluation and treatment of children with arthrogryposis multiplex congenita (AMC).
Materials and methods: Rehabilitation practitioners worldwide with at least 2 years of experience with AMC were invited to complete an electronic survey on the evaluations and treatments used with children with AMC within five areas: muscle and joint function, self-care, mobility, pain, participation and psychosocial wellbeing.
Results: Sixty five participants from nine countries completed the survey. Participants completed the sections applicable to their practice. Number of participants within each area varied between 24 and 53. Over 80% of participants used non-standardized evaluations across areas while <50% used patient-reported or standardized measures. Stretching of upper and lower limbs was reported by >80% across ages and clinical presentation severity. Strengthening reported by >70% was mainly used among children >3 years old with less severe contractures. Other interventions used across areas included orthotics (>70%), positioning (>80%), activity-based training (>80%), assistive devices for self-care (>50%) and mobility (>80%), and energy conservation (>70%). Over 70% of participants were involved in perioperative rehabilitation.
Conclusion: Knowledge of current pediatric rehabilitation practice in AMC, together with empirical evidence, may guide clinical decision-making and identify avenues for future research.
Keywords: Rehabilitation; arthrogryposis; evaluation; musculoskeletal disorders; pediatrics; treatment.
Arthrogryposis multiplex congenita (AMC) is a group of rare conditions and there is currently little empirical evidence on rehabilitation, therefore expert opinion is important to guide best practice.Rehabilitation practitioners should consider the areas of muscle and joint function, self-care and mobility, pain, participation, and psychosocial wellbeing when evaluating and developing a treatment plan for children with AMC.Considering the heterogeneity of AMC, different assessment tools may be selected depending on the clinical presentation of each child.In addition to stretching, orthotic use, and strengthening, the use of activity based training and assistive equipment is important to promote self-care, mobility and participation.