Purpose: This study evaluates the perceived functional and psychosocial impact of upper limb congenital anomalies prior to surgical intervention, utilizing the Pediatric Outcomes Data Collection Instrument (PODCI) and Patient-Reported Outcomes Measure Information System (PROMIS) domains. We hypothesized that scores will be in the normal range and that the 2 outcomes measures will have strong convergent validity. Methods: A multicenter prospectively collected database of congenital upper limb patients, the CoULD (Congenital Upper Limb Differences) study group, was utilized. Demographic information was collected, and anomalies were classified by the Oberg-Manske-Tonkin (OMT) classification. Scores for PODCI subscales of Upper Extremity (UE) function, Pain/comfort, and Happiness and PROMIS domain of UE function, Pain, Depression, Anxiety, and Peer relations were collected. Ceiling and floor effects and convergent validity for PODCI and PROMIS domains were calculated. Results: Three hundred fifty-nine patients, average age 10 years and 55% male, were included. Two hundred forty-one patients had a malformation of the entire limb and 231 had a hand plate malformation. Four patients had a deformation, 118 dysplasia, and 45 a syndrome. There was no difference between the PODCI and the PROMIS ceiling or floor effects for the UE domains. The ceiling effect for PROMIS Pain domain (46%) was similar to the floor effect of the PODCI Pain subscale and no difference was seen between the floor effect of PODCI Happiness and PROMIS Depression domains. Convergent validity was obtained for the UE and Pain domains, and also between PODCI Happiness and PROMIS Depression subscales. Conclusions: The PROMIS domains for UE function, Pain, and Depression are comparable with PODCI scores in congenital upper extremity anomalies. Clinical relevance: Given the large burden placed on patients with the lengthy PODCI questionnaire, consideration of replacing the PODCI with the more quickly obtained PROMIS scores may reduce patient burden and provide similar information in this population.
- patient-reported outcomes