Workstream 1 - What is successful treatment

It is known that each of the four characteristics are important in describing the success of treatment of different surgical conditions affecting children. It is also known that it is possible to combine these characteristics into a single description, or measure, of “successful treatment” – this is known as a summary outcome measure.

However, what is not known, is how to combine these characteristics to create a meaningful summary outcome measure. By asking for your views about how important these characteristics are in relation to one another, this survey will give us the information we need to be able to combine them.

By combining information about condition-specific aspects of a child's health and wellbeing with information about more general aspects of the child's health and wellbeing, it will be possible to define a summary outcome measure of 'successful treatment' that is as relevant to the treatment of a child with one condition e.g. Hirschsprung's disease, as it is to another child with a different condition e.g. oesophageal atresia.

By including information about the child's quality of life in the summary outcome measure, we will be able to account for condition-specific aspects of a child's health and wellbeing in the definition of successful treatment. For example, problems controlling their bowels may be important in defining successful treatment in a child with Hirschsprung's disease, whereas problems swallowing may be important in a child with oesophageal atresia.

There are some elements of treatment that will affect the health and wellbeing of all children with a surgical condition, regardless of the condition that they have. Because individual surgical conditions affecting children are generally rare, in order to understand what impact these 'shared elements of treatment' have on children's health and wellbeing, it is necessary to combine information about a large group of children with many different conditions.

Currently, for many children with surgical conditions, information will be known and reported about a variety of different aspects of their health and wellbeing. For example, for a child who was treated for appendicitis, it might be known that they had one operation, stayed in hospital for five days, had one wound infection and took two weeks to get back to school. However, what is not known is whether that child's treatment should be described as successful or not. It is necessary to know whether a child's treatment should be classed as successful in order to meaningfully combine information about children treated for many different surgical conditions. Developing a single summary outcome measure which describes the overall success of treatment of any surgical condition will allow this to be done.

A summary outcome measure such as this will not replace the need to collect and report information about condition-specific aspects of children's health and wellbeing However, it will provide additional information which can be used to improve the care of children with surgical conditions.

The information you provide taking part in this study is the research data which will be used for the purpose of the research described above. Research is a task that we perform in the public interest. Further information about your rights with respect to your personal data is available from https://compliance.admin.ox.ac.uk/individual-rights.

Your email address is the only information we will collect that identifies you. We will only use this to send you your unique link to the survey. It will not be used for any other purpose or shared with anyone else. Your email will be stored separately to your survey responses so that it will not be possible to link them to you.

All research data, including your email address, will be stored in access-controlled password-protected files on the University of Oxford secure servers. We will securely delete your email address when the study closes. The research data from which you cannot be identified (anonymous) will be stored indefinitely after the study ends.

We will publicly share the findings from the study in e.g. academic publications, presentations, website articles. We may also share research data with other research groups. However, it will not be possible to identify you from these.

We will take all reasonable precautions protect your personal data against unauthorised access, unlawful use, accidental loss, corruption or destruction.

Authorised members of the study team at the University of Oxford will have access to the research data. Responsible members of the University of Oxford may be given access to data for monitoring and/or audit of the research.

This study has been reviewed by, and received ethics clearance through, the University of Oxford Central University Research Ethics Committee (Reference number: R59631/RE001).

If you have a concern about any aspect of this study, please contact the CSOR Programme Manager, Hatty Goddard by email (harriet.goddard@npeu.ox.ac.uk) or by phone on 01865 617771 and we will do our best to answer your query. We will acknowledge your concern within 10 working days and give you an indication of how it will be dealt with. If you remain unhappy or wish to make a formal complaint, please contact the Chair of the Research Ethics Committee at the University of Oxford who will seek to resolve the matter as soon as possible: Chair, Medical Sciences Inter-Divisional Research Ethics Committee; Email: ethics@medsci.ox.ac.uk; Address: Research Services, University of Oxford, Wellington Square, Oxford, OX1 2JD.