Home, school, and community mobility: An analysis of factors influencing the mobility of children and adolescents with arthrogryposis multiplex congenita.

This study aimed to describe the mobility function of children and adolescents aged 5 to 21 years living with AMC and identify factors associated with functional mobility across different settings within this population.

This cross-sectional study analyzed data from 237 individuals with AMC (age 0-21 years) drawn from a North American AMC registry across eight hospitals. Functional mobility was assessed using the Functional Mobility Scale (FMS), which evaluates walking ability, considering the range of assistive devices a child/adolescent might use over three distances: five meters, 50 meters, and 500 meters, representing mobility at home, school, and in the community, respectively. Descriptive analyses characterized the population and their functional mobility, while generalized ordinal logistic regression explored factors associated with functional mobility at varying distances. Explanatory variables were selected based on a literature review.

The study population had a mean age of 10.6 (±3.69) years. According to the Bamshad classification, 47.7% had Amyoplasia, 24.9% had distal arthrogryposis (DA), and 14.8% had CNS/syndromic AMC. A majority (76%) had contractures in the upper and lower limbs, with a mean of 11 joints affected per child, of which 7 had moderate to severe contractures. The median FMS scores for home and school mobility were 5, while community mobility scored a median of 3. Notably, 65.8% of the participants' parents had attained a college or higher degree, and 67.5% were employed.

Multivariate analysis revealed that having DA or Amyoplasia (OR = 4.217; 95% CI [1.805 - 9.993]; OR = 2.677; 95% CI [1.279 - 5.644]) or employed parents (OR = 2.721; 95% CI [1.487 – 5.013]) were positively associated with better home and school mobility. Conversely, both knees contractures (OR = 0.126; 95% CI [0.054 - 0.283]), total number of severe contractures (OR = 0.900; 95% CI [0.835 – 0.968]), both hips contractures (OR = 0.151; 95% CI [0.060- 0.372]), and higher pain intensity (OR = 0.858; 95% CI [0.746 - 0.982]) were associated with worse community mobility.

This study highlights the influence of factors affecting mobility in children and adolescents with AMC across different environments. The findings underscore the importance of focusing on knee and hip contractures and pain management to enhance functional community mobility. Future research should explore longitudinal outcomes to better understand these factors' predictive role in mobility improvement.

The identified factors should be integrated into rehabilitation programs early on, targeting the functional mobility of individuals with AMC in various settings.