• Children with arthrogryposis involving the upper extremity (UE) commonly have impaired motion and strength due to contractures; however, they develop compensatory movements to achieve a higher level of function than may be anticipated1
• The World Health Organization (WHO) International Classification of Function – Children and Youth2 recommends evaluation of body structure & function, ability to perform activities and participate in life roles, and quality of life
• Clinicians typically evaluate body structure & function (strength & range of motion), but this does not necessarily characterize a child’s ability to perform activities and participate in life roles
• The Patient Reported Outcome Measurement System (PROMIS)3,4 is designed to measure all WHO domains for people with chronic disease
• PROMIS Pediatric Short Forms include 5-8 questions that measure Mobility, UE Function, Pain Interference with activities, and Peer Relationships using T scores that compare to a reference population
• PROMIS has been used in two studies of arthrogryposis5,6 :both were encouraging but small
• A study of a larger cohort could better describe function and validate PROMIS in this population