Developing a Parental-Friendly Scoring System for Children with Congenital Hand Differences.

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. 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. 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). 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.