Social Deprivation and Congenital Upper Extremity Differences—An Assessment Using PROMIS

Purpose: Social deprivation, a measure of socioeconomic status, has been shown to negatively affect perceptions of orthopedic conditions and outcomes of treatment. The objective of this study was to assess whether social deprivation correlates with subjective assessment of function in pediatric patients with congenital hand differences. Methods: Patients enrolled in the Congenital Upper Limb Differences (CoULD) registry were assessed using the Patient-Reported Outcomes Measurement Information System (PROMIS). The PROMIS scores for Pain Interference, Peer Relations, Anxiety, Depression, and Upper Extremity (UE) function were obtained for all patients 5 years and older at initial presentation. Social deprivation was determined by the Area Deprivation Index (ADI); the index ranges from 0 to 100 with higher scores being the most deprived. The PROMIS scores were correlated with the ADI for all patients. Results: Three hundred seventy-five pediatric patients with congenital UE differences were evaluated. Average age was 11 years, 56% were female, and 55% had bilateral involvement. Overall, PROMIS scores were within 1 SD of normal for Peer Relations, Pain, Depression, and Anxiety. However, child-reported scores for UE function (39) were more than 1 SD below the national average (50). The mean ADI for the cohort was lower than the national average, indicative of less deprivation, with 14% of patients in the most deprived national quartile. Children in the highest ADI quartile reported PROMIS scores that reflected higher Pain Interference (41 vs 45), lower Peer Relations (55 vs 50), higher Anxiety (44 vs 49), and higher Depression (43 vs 47) than children in the lowest ADI quartile. Conclusions: The PROMIS scores were normal for psychosocial measures in children with congenital hand differences when evaluated as an entire cohort. However, child self-reported PROMIS scores for Pain Interference, Peer Relations, Anxiety, and Depression were worse in more socially deprived areas, suggesting more psychosocial challenges in these children. Clinical relevance: Pediatric patients with congenital upper extremity differences in areas of higher social deprivation report lower psychosocial well-being. The care of these individuals must be considered within the context of their environment because they may be more at risk for negative outcomes secondary to environmental and societal stressors.