gms | German Medical Science

Objectives/Interrogation: The Oberg, Manske and Tonkin (OMT) system for congenital upper limb anomalies was designed to allow clinicians to reliably classify an anomaly, based on its embryological origin [1]. Despite this, uptake is slow amongst clinicians, largely due to a reluctance to learn embryology. Without discussing embryology, clinicians focused on the treatment plan but often stop short of explaining to parents 'why' congenital hand differences (CHDs) happen. The primary aim of this work was to evaluate the importance of understanding embryology for parents of children born with CHDs. Secondarily we aimed to investigate whether this importance of embryology correlates with disease severity, maternal age or level of education.

Methods: A retrospective, self-administered questionnaire was designed to evaluate the importance of embryology of CHDs for parents within a congenital hand clinic. Parents were given a simple explanation of normal upper limb embryology by a consultant hand surgeon and possible theories of why development 'went wrong', based on current developmental biology knowledge. A questionnaire was then completed, with responses rated on a scale of 1-5 (5 being most important).

Results and Conclusions: Responses were collated from 25 questionnaires. Importance of knowing why CHDs happen was given an average rating of 4.46 ± 0.13 by parents. 84% of respondents believed understanding the embryology of the hand would improve their understanding of why CHDs happen. Parents desired a mean level of knowledge of 3.92 ± 0.22, where 1 represents no knowledge and 5 is of the medical textbook level. Only 52% of parents reported that possible causes of CHDs were discussed with them at time of diagnosis. Overall, 64% believed their questions were adequately answered, and just 40% were aware of specialist support charities.

Analysis of variance (ANOVA) was performed to investigate the secondary aim of the study. Results showed that there was no statistically significant relationship between the importance of understanding embryology and disease severity (p=0.687), maternal age (p=0.161) or maternal level of education (p=0.145).

We have provided preliminary evidence that suggests parents are interested in understanding, to a reasonably high level, the embryology and hence 'why' CHDs happen, irrespective of disease severity, maternal age or maternal level of education. This study further supports the importance of understanding embryology among clinicians, and the use of the OMT in regular clinical practice.