Workstream 3b - Quality of life data

Previous work has shown that in order to determine how successful a child's operation has been, it is important to collect data about their quality of life. There are many different tools that can be used to collect information about children's quality of life, but the majority of these are relatively generic, and do not necessarily reflect the impact that condition-specific factors are having on a child's quality of life. However, a tool called the SEIQoL-DW has been developed in order to try and produce a more individualised quality of life measure, by ensuring that condition specific factors, such as difficulty in swallowing for children with oesopahgeal atresia, or incontinence for children with Hirschsprung's disease, are taken into account when working out a score to represent that child's quality of life. In workstream 3b, parents of children who have undergone early surgery will be asked to test the existing computer interface that is used to complete the SEIQoL-DW and will then be interviewed regarding their experiences of it. This feedback will be used to refine the interface for incorporation into the CSOR database.