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Patient-reported Outcomes in Arthrogryposis.

Lindley B Wall¹, Carley Vuillerman², Patricia E Miller²

¹Department of Orthopaedic Surgery, Washington University School of Medicine, Saint Louis, MO.

Journal of Pediatric Orthopedics

|February 11, 2020

Summary

Children and adolescents with arthrogryposis report lower upper extremity function. While emotional well-being aligns with norms, amyoplasia patients show worse functional outcomes than distal arthrogryposis patients.

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Area of Science:

Pediatric Orthopedics
Rehabilitation Medicine
Patient-Reported Outcomes

Background:

Limited understanding of patient-reported health status in pediatric arthrogryposis.
Need for validated instruments to assess functional and psychosocial aspects.

Purpose of the Study:

To investigate functional and psychosocial measures in children and adolescents with arthrogryposis.
To compare patient-reported outcomes between distal arthrogryposis and amyoplasia subtypes.

Main Methods:

Utilized Patient-Reported Outcome Measurement Information System (PROMIS) and Pediatric Outcomes Data Collection Instrument (PODCI) questionnaires.
Evaluated 29 pediatric patients with arthrogryposis from a prospective longitudinal cohort.
Assessed PROMIS measures (upper extremity function, pain, depression, anxiety, peer relations) and PODCI measures (upper extremity function, pain, happiness, global function).

Main Results:

Median PROMIS upper extremity (UE) function scores were significantly below population norms for both distal arthrogryposis (31) and amyoplasia (22).
PODCI UE function scores were statistically lower in the amyoplasia group compared to the distal arthrogryposis group.
PROMIS pain, depression, anxiety, and peer relations, as well as PODCI pain and happiness, were within normal ranges for both groups.

Conclusions:

Pediatric patients with arthrogryposis demonstrate reduced upper extremity function compared to population norms.
Despite functional deficits, emotional states (pain, depression, anxiety, peer relations, happiness) are consistent with population norms.
Amyoplasia subtype is associated with worse functional outcomes than distal arthrogryposis.