Current rehabilitation practice for the evaluation and treatment of children with arthrogryposis: an international survey

Abstract

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.

Implications for Rehabilitation

• 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.

Keywords:

• Rehabilitation
• arthrogryposis
• pediatrics
• musculoskeletal disorders
• evaluation
• treatment

Acknowledgements

We would like to thank Guylaine Bédard for the graphic illustrations, Kathleen Montpetit and Nancy Descoteaux for piloting the survey questionnaire. The following clinicians provided their approval to be acknowledged for their participation in this study: Abby Marcouiller, Bogusia, Caroline Elfassy, Charles Cericola, Claire Huzar, Connie Leibow, Elzbieta Zimmermann, Ingrid Parry, Janet Dawson, Jennifer Massimino, Jessica Montoya, Kermen Vagner, Koska-Glebowska, Leslie Vogel, Mary, Maureen Donohoe, Melanie Malkin, Mia Dunkley, Michelle Hsia, Nathalie Bilodeau, Sandra Nickel, Suzanne Cherry and Veronique Thellier.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This project was funded by a Knowledge Translation Grant from the Edith Strauss Foundation [#253636]. Dr. Dahan-Oliel holds a clinical research scholar award [#250846] and acknowledges the support for the establishment of young clinical researchers [#251331] from the Fonds de la recherche en Santé-Québec.