Patient-reported Outcomes Measurement Information System (PROMIS) scores for children with brachial plexus birth injury

Background:Patient-reported Outcomes Measurement Information System (PROMIS) for pediatrics is a validated patient-reported or parent-proxy-reported outcomes assessment tool used to evaluate health-related quality of life in children and adolescents with chronic medical conditions. The health-related quality of life of children with brachial plexus birth injury (BPBI) as measured by PROMIS is not well understood. We hypothesized that children with BPBI would report impaired upper extremity (UE) function but normal mobility, pain interference, and peer relationships compared with a reference pediatric population, and that UE function PROMIS scores would be associated with BPBI severity and patient age.Methods:This is a retrospective cohort study of 180 children with BPBI ages 5 to 17 years old who responded to 4 pediatric PROMIS domains (mobility, pain interference, peer relationships, and UE function) between April 2017 and April 2019. Responses were converted to a T score, which allows comparison with a reference pediatric population (mean reference score=50). Multivariable linear regression was used to quantify the association between PROMIS scores and age, sex, Narakas type, and composite Mallet score.Results:Children with BPBI had normal PROMIS mobility (49.6±8.5), pain interference (44.6±9.7), and peer relationships (52.4±10.6) scores, but reported mild impairment in UE function (40.8±12.1). Age (P<0.0001) and Narakas type (P=0.02) were associated with PROMIS UE function scores, but sex and composite Mallet scores were not. There were no significant associations between the other PROMIS domains and age, sex, Narakas Type, or composite Mallet scores.Conclusions:Children with BPBI reported PROMIS scores for mobility, pain interference, and peer relationships similar to the reference population but impairment in UE function. Reported UE function decreased with increasing disease severity and increased with age. These PROMIS domains seem to be useful tools for the clinician to evaluate children with BPBI and better understand the challenges they face. Further study is needed to assess their utility in measuring the effects of treatment interventions.Level of Evidence:Level III.