An analysis of the functional and psychosocial impact of congenital upper limb differences using PROMIS®: data from
Daniel J Wilks1,2,3, Jevan Cevik1, Joanne Kennedy3
1Department of Plastic and Maxillofacial Surgery, Royal Children's Hospital, Australia.
Insights
Children with congenital upper limb differences (CULDs) experience significant upper extremity functional impairment. Physical function is closely linked to psychosocial wellbeing, as measured by PROMIS® tools.
Area of Science:
- Pediatric Orthopedics
- Rehabilitation Medicine
- Child Psychology
Background:
- Congenital upper limb differences (CULDs) impact children's functional and psychosocial development.
- Standardized outcome measures are crucial for tracking progress in CULDs management.
- The Australian Hand Difference Register collects data on children with CULDs.
Purpose of the Study:
- To evaluate the implementation of Patient-Reported Outcomes Measurement Information System (PROMIS®) tools in the Australian Hand Difference Register.
- To assess functional and psychosocial outcomes in children with CULDs across different developmental stages.
- To examine the relationship between physical function and psychosocial wellbeing in this population.
Main Methods:
- PROMIS® tools were administered to 136 children with CULDs aged 5, 8, 11, 14, and 17 years.
- Data were collected between May 2021 and July 2023.
- Outcomes were compared to a reference population, and correlations between physical and psychosocial domains were analyzed.
Main Results:
- Children with CULDs showed significant reductions in upper extremity function compared to the reference population, except at age 17.
- Parent-proxy reports at age 5 indicated lower function than self-reports at older ages.
- Psychosocial scores were generally similar to the reference population, with a negative difference noted at age 17. Higher upper extremity function correlated positively with better psychosocial outcomes.
Conclusions:
- PROMIS® tools effectively capture functional and psychosocial outcomes in children with CULDs within a register.
- Significant upper extremity functional impairment is evident in children with CULDs.
- Physical function is strongly associated with psychosocial wellbeing in children with CULDs, highlighting the need for integrated care approaches.
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.
