There are no proven, tried and tested hand, arm and shoulder movement tests for children. Patients born with hand problems are often treated with surgery to improve their movement but doctors cannot always be sure this works, as there are no standard tests available to test the affect of surgery.
The consultation exercise had two main functions, to look at and review the main questionnaire used to assess adults and assess suitability of it for children and young people. Secondly, young people were asked about a new outcome measure and comment on which age group it is appropriate for and how effective it could be.
The consultation was conducted using a focus group methodology. The group were presented with key information about the trial and were then given the opportunity to discuss any themes that emerged following a presentation and a practical demonstrate of the assessment tool. Discussions were recorded and then transcribed. Analysis of discussions was then carried out by identifying themes that emerged.
12 members aged 8 to 18 of the West Midlands Medicines for Children Research Network Young Person’s Group were involved in the focus group.
Many themes emerged as a result of the presentation and the study generated a lot of interest and discussion:
The consultation exercise shows the vast impact young people can have on designing studies at very early stages, to ensure research is relevant and impacting of families’ quality of life as well as being of financial benefit.