NON-STOP
Introduction/background
This website will provide information about the NON-STOP (NON-Surgical Treatment Of Perthes’ Disease) project, a NIHR-funded PhD currently being undertaken by Adam Galloway and team. Adam is a children’s physiotherapist at Leeds Children’s Hospital and NIHR Clinical Doctoral Research Fellow at University of Leeds. The overall aim of the PhD is to understand the experiences of the people currently giving/receiving care for Perthes’ Disease and to develop a digital intervention (an application for a smart device) to improve self-management for the condition.
Perthes’ Disease is a condition that results in collapse of a child’s hip bone, affecting their ability to run, play sports and some children find even walking difficult. There is lots of uncertainty around the treatment of Perthes’ Disease and as part of my NIHR pre-doctoral fellowship I completed a study that demonstrated the wide variation in treatments within current clinical practice. With insufficient research evidence for guidance, clinicians have differing views about treatment options. These vary from observation alone, to plaster casts, to invasive surgery. Physiotherapy treatments, including exercise rehabilitation or advice on lifestyle change, are often considered important parts of care but there is little evidence about the effectiveness of this rehabilitation.
Parents have told me that there is a lack of consistent advice between physiotherapists and orthopaedic surgeons/specialists, and that this can cause them considerable anxiety. Accessing treatments in specialist centres can add further practical challenges for children and their families. In my PhD, I have designed a programme of research aims to address some of these challenges. With the support of children and their families and clinicians, we plan to develop a digital rehabilitation programme of care, which is accessible for all children with Perthes’ Disease.
Study plan
The PhD is funded for 4-years, during this time there are three major pieces of work, called workstreams.
Workstream 1 will help shape what the intervention i.e., the app, will look like. This will be done by interviewing children with Perthes’ Disease and their families as well as NHS staff that look after children with Perthes’ Disease. The interviews will help us understand what we can do to better support patients with the condition.
Workstream 2 will involve working with expert app-developers to design the app. It will involve asking specialists in the UK what the app should include and running ‘workshops’ to look at the early-stage versions of an app.
Workstream 3 will be a study to test how the app works with children with Perthes’ Disease. This testing will tell us a lot about how the app works and how ‘user-friendly’ it is. If this is successful, it will be possible to share the app with a lot more patients/families.
Workstream 1 – Experiences of key stakeholders in Non-Surgical Treatment of Perthes'
This study is an important step in the development of the app, during which we plan to explore the experiences and viewpoints of the most important people involved in Perthes’ Disease.
We will ask children with Perthes’ Disease and their families, and healthcare professionals like surgeons and physiotherapists, what they think is important when caring for children with Perthes’ Disease. Discussions will also include how they would like to receive that care, specifically considering how rehabilitation care can effectively be delivered using a digital app. Participants for this study will be asked to take part from any hospital in the UK currently managing children with Perthes’ Disease. The interviews will continue until we have recruited up to 20 pairs of children with Perthes’/guardian and 12 NHS staff who care for those with Perthes’ Disease.
The interviews for this study will mostly take place over a video call, this is to make sure people taking part don’t have to travel unnecessarily for a face-to-face interview. Especially when we know children have already missed a lot of time either at school or socialising with friends! But also, it means that we can talk to people from all over the country to make sure we don’t miss anyone out.
The results of this study will be shared so that it is accessible by all. We will produce articles to be published in medical journals as well as information to share with groups who support children with Perthes’ Disease, and through social media. We will ensure results are fed back in a ‘fun’ child-friendly way, using videos and electronic leaflets to make sure the answers we get are available to everyone.
Workstream 2 – Developing clinical consensus on Non-Surgical Treatment of Perthes’
In the second study of the NON-STOP project we are completing a Delphi study. This type of study is used a lot in health research and in this study, it will be used to decide on what the most important parts of treatment for Perthes’ Disease are.
It is an online study and the people taking part are healthcare professionals like physiotherapists, nurses, surgeons and anyone else that looks after children with Perthes’ Disease. In the study they will complete a survey made up of lots of different statements about Perthes’ Disease. After every statement, people will be able to say how much they agree or disagree with the statement. Once everyone has completed the survey, we will gather the results and provide a list of statements that people agreed on. These statements will be the recommended treatment approach for NON-STOP.
To make sure we share the results with all of the people who matter, we will use things like this website, Twitter and other websites like charity websites to update people.
