Functional Independence of Children With Arthrogryposis
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Published on: August 9, 2024
Lauren C Hyer1, Emily R Shull, Lisa V Wagner
1Shriners Children's, Greenville, SC.
Insights
Children with arthrogryposis multiplex congenita (AMC) face significant limitations in daily activities and mobility. This study highlights their functional independence challenges, providing a benchmark for treatment outcomes.
Area of Science:
- Pediatric Orthopedics
- Developmental Pediatrics
- Rehabilitation Medicine
Background:
- Arthrogryposis multiplex congenita (AMC) is characterized by multiple joint contractures in children.
- Objective data on functional independence in AMC is limited, hindering treatment evaluation.
- This study assesses functional independence in children with AMC using standardized assessments.
Purpose of the Study:
- To describe the functional independence of children with AMC.
- To utilize the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT) and observational ADL tasks.
- To establish a reference for evaluating treatment efficacy in AMC.
Main Methods:
- Prospective study of 44 children aged 3-12 years with AMC.
- Parents completed the PEDI-CAT; occupational therapists observed functional ADL tasks.
- Patients grouped by developmental age: preschoolers (3-5), early school-age (6-9), late school-age (10-12).
Main Results:
- Mean PEDI-CAT T-scores: daily activities 25.80, mobility 17.39.
- Late school-age children scored significantly lower than preschoolers in daily activities and mobility (P<0.01).
- Observed ADL tasks required significant assistance (27.3%-61.4%), though older children showed more independence (P=0.05).
Conclusions:
- Children with AMC exhibit significant limitations in functional independence, especially in daily activities and mobility.
- Findings provide a crucial reference point for assessing nonoperative and surgical interventions.
- This research underscores the need for targeted interventions to improve functional outcomes in AMC.
Background:
Arthrogryposis (AMC) is a descriptive term to characterize a child born with multiple joint contractures. Treatment aims to improve functional independence, yet the literature objectively describing functional independence in this population is scarce. This study aimed to describe the functional independence of children with AMC through the lens of the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT) and observational activities of daily living (ADL) tasks.
Methods:
Patients with AMC between the ages of 3 and 12 years participated in this prospective study. Parents completed the PEDI-CAT while a trained occupational therapist observed children as they completed a checklist of functional ADL tasks. Patients were grouped according to developmental age groups: "preschoolers" (3 to 5 y), "early school-age" (6 to 9 y), and "late school-age" (10 to 12 y). Patient's PEDI-CAT normative scores were described, comparing the study population to typically developing children, and differences in each domain were examined between developmental age groups. The observed ADL tasks completed were also described, and differences in scores were examined between developmental age groups.
Results:
Forty-four patients (mean age of 7±2.86 y) were enrolled. The distribution between age groups was nearly even. Mean daily activities T -score for patients with AMC was 25.80±11.98 and the mean mobility T -score was 17.39±9.77. Late school-age children scored significantly lower than preschool-age children in both of these domains ( P <0.01). Observed ADL tasks demonstrated a high level of required assistance for patients (range: 27.3% to 61.4%), although older school-age children did show greater independence with tested activities than preschool-age children ( P =0.05).
Conclusion:
Children with AMC are significantly limited in functional independence, particularly regarding age-appropriate daily activities and mobility. Outcomes from this study provide a reference to help gauge the results of nonoperative and surgical treatment toward improving functional independence in this population.
Level Of Evidence:
Level III: prognostic study.
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