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Young people’s views on developing a paediatric hand and upper limb outcome measure

By Minervation,

Background

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.

Aims of consultations

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.

Methodology

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.

Participants

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.

Findings

Many themes emerged as a result of the presentation and the study generated a lot of interest and discussion:

  • Children/young people’s altruism
  • Young people’s ability to understand finances
  • Good strategy to recruit control group via school
  • Names of study’s or research material need to be age appropriate
  • Not to give specific ages to research material – so young people can choose the information appropriate for their need/ability
  • Instructions for questionnaires need to be very clear and simple
  • Answer format for questionnaires need to be consistent
  • Questionnaires for young people with medical conditions need to be fit for purpose
  • Questionnaire should have clear categories
  • Sensitivity needs to be paramount when talking to young people about health conditions/disabilities/self perceptions
  • Consideration if questionnaires can be anonymous if accurate answers are required
  • Assessment tools need to be modified for age groups
  • How traumatic surgery is for young children and families
  • The importance of studies impacting of young people quality of life

Conclusion

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.