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.
Keywords
Get full access to this article
View all access options for this article.
References
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
