An analysis of the functional and psychosocial impact of congenital upper limb differences using PROMIS®: data from the Australian Hand Difference Register

Abstract

This study evaluated the implementation of PROMIS® tools within the Australian Hand Difference Register to assess functional and psychosocial outcomes in children with congenital upper limb differences (CULDs). One-hundred and thirty-six children out of 212 invited completed the questionnaires between May 2021 and July 2023. Six PROMIS® tools covering physical and psychosocial domains were evaluated at four ages: 5 (n = 40), 8 (n = 26), 11 (n = 32), 14 (n = 25) and 17 years (n = 13). Significant reductions in upper extremity function compared with the reference population were confirmed, except at age 17. Parent-proxy reports at age 5 indicated significantly lower function compared to self-reported scores at older ages. Psychosocial scores were similar to the reference population, except at age 17 when significant negative differences were found, but overall higher scores in upper extremity function positively correlated with better results in all psychosocial domains. Using PROMIS®, our findings show that children with CULDs experience significant upper extremity functional impairment, and that physical function is closely linked with psychosocial wellbeing. This study suggests that PROMIS® tools, when implemented within a register, provide an effective means of capturing these functional and psychosocial outcomes across development.

Level of evidence: III