Functional Outcomes and Health-Related Quality of Life of Adults with Congenital Below-Elbow Amputation in North America.

PURPOSE:Congenital below-elbow amputation (BEA) is a common upper-extremity anomaly and generally encompasses 2 diagnoses, symbrachydactyly and transverse deficiency. Little is known about the physical, mental, and social well-being of adults with congenital BEA. A deeper understanding of longitudinal outcomes within this population may help guide family conversations and counseling for patients with congenital BEA.METHODS:The Shriners Hospitals for Children Health Outcomes Network was queried to identify all patients currently >18 years of age who had been seen as a child between 1975 and 2019 for congenital BEA at 1 of 20 Shriners Hospitals across North America. A unique health survey examining physical functioning, mental health, social outcomes, and health-related quality of life was constructed and sent by mail or in electronic form to eligible patients.RESULTS:A total of 64 questionnaires were completed. Patients ranged between 18 and 34 years of age, and 70% were female. Nearly two-thirds of patients (64%) reported that a prosthesis was not required and only 14% reported daily prosthetic use. Although respondents reported below-average Patient-Reported Outcomes Measurement Information System (PROMIS) upper-extremity scores, there were no differences in Short-Form 12 or Quick Disabilities of the Arm, Shoulder, and Hand scores relative to the US general population. Study participants had lower PROMIS Pain Intensity and higher PROMIS satisfaction with social roles and activities scores than the US general population, translating to clinically meaningful differences.CONCLUSIONS:Although adults with congenital BEA report lower upper-extremity functional scores than the general population, they report no clear differences from normative values in self-efficacy, psychosocial well-being, health-related quality of life, or global life satisfaction.TYPE OF STUDY/LEVEL OF EVIDENCE:Prognostic IV.