RESUMO
Background: Congenital hand differences (CHD) exhibit enormous diversity and heterogeneity. Surgeons and parents often have different concepts of severity, making things difficult during parental consultation. This study aims to align surgeon/parental views on the severity of the child's CHD using a novel severity classification. Methods: Parents of affected children were asked to score the severity of their child's abnormality pre- and post-consultation using a subjective scale (1-4) without any explanation. Furthermore, parents were asked to rate their concerns about the future function and appearance of their child's hand condition using a similar scale of 1-4. They were then asked to rate the severity of the CHD post-consultation and three months post-operatively following explanation of the 4-point scale, as follows: 1 = treatment possible to normal; 2 = treatment possible to near normal; 3 = treatment possible but always some hand differences; 4 = treatment not possible. The surgeon also independently scored all children using his perception of the scale. Results: Forty-three children with a range of CHD were recruited into the sample. Linear weighted kappa analyses comparing inter-rater agreement showed no agreement between surgeon and parents during the initial scoring without any explanations. However, with explanations added, agreement rose significantly (kappa = 0.437 post-consultation and kappa = 0.706 three months post-op). No correlation was found between severity with both appearance and function (r = 0.277 and r = -0.184, respectively). Conclusions: This study demonstrated that the use of a simple scoring system was able to improve parental understanding of the severity and prognosis of CHD. The system demonstrated a good correlation between surgeon and parents. Such a scoring system can be easily utilised in the outpatient department to manage expectations and reduce anxiety.
