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.
Workstream 3 – Testing the NON-STOP app
The final part of the NON-STOP project is to test the NON-STOP app. In this final study, children with Perthes’ Disease and their families will use the NON-STOP app for 6-weeks.
The app contains information about Perthes’ Disease and advice on what they should do/avoid. It also provides information about other ways to stay healthy, both physically and mentally, with a wellbeing section that directs users to other wellbeing resources. The other parts of the app are focused on physiotherapy exercises to help children with Perthes’ Disease keep their muscles working in the best way possible. There is an activity diary for users to track their progress too and they get rewards for using it every day.
After using the app for 6-weeks, some people who used the app will be asked questions about how the app worked and what they thought of it. We’ll use these answers as well as some facts about how much it was used over the 6-week period to show us how useful the NON-STOP app is.
Once we have these results, we’ll share them with everyone using fun ways, like the posters we have done in the past.
NON-STOP Study 1 – Qualitative interview study with key stakeholders
As part of the NON-STOP project, the first research study asked questions to those most involved in the care of children with Perthes’ Disease. These were children with Perthes’ Disease, because who knows better than the person living with the condition?! The families of the children with Perthes’ Disease, because it’s important to understand the people who are responsible for caring for the children with the condition all day every day. And finally, the clinicians providing clinical care for children with Perthes’ Disease, because these are the people who have been providing clinical advice for the children and their families for decades.
In this study, questions were asked about the care currently provided to children with Perthes’ Disease. Questions were asked about what has worked well, what hasn’t worked so well and also, what could we do differently to help improve care for these children. We also talked to the experts about whether they’d be open to using an app to help children manage their Perthes’ Disease. Getting input from these important people means that any changes that we might make to care in the future will be based on thoughts of the real experts.
The results of this study included 5 main themes:
- Care for Perthes’ Disease is different in lots of places and people want more evidence on how best to look after children with Perthes’ Disease.
- We need to have good reason for doing what we do and this needs to focus on what’s important for the child with Perthes’ Disease and the family.
- An app would something children with Perthes’ Disease would be willing to try.
- An app should include educational information about Perthes’ Disease but also fun and interactive activities for children.
- Any app should be something that would be used in a range of settings such as home, school and hospital.
For further information about the research study, please see our fun poster.
NON-STOP Study 2 – Developing clinical consensus for NON-STOP
In workstream 1 we spoke to children with Perthes’ Disease, their families, and the healthcare professionals who look after them. We found out lots about what care for Perthes’ Disease looks like at the moment, and what it has looked like in the past. More interesting than that, we found out what the most important people think it should look like in the future! Our experts (YOU!) have told us that an app would be a good idea to help children with Perthes’ Disease manage their condition.
Now comes the important part of making an app, we need to decide what goes on it. In the interview study that we have just finished, we got lots of ideas of what an app would have on it in order to make it fun, and engaging for the people using it. What we need to do now, is make sure that it does everything that the people giving it out want it to. To do that, we’re using a Delphi study to find out what the NHS staff looking after children with Perthes’ Disease agree are important in the Non-Surgical Treatment of Perthes’ Disease.
This study is an online study, the people taking part are physiotherapists, surgeons, nurses and any other healthcare professionals that look after children with Perthes’ Disease regularly. They will complete an online survey, this will include statements that have been designed by an advisory group of physiotherapists, nurses and surgeons. The people completing the survey will read the statements, and decide whether they agree or disagree with the statements. After this is done, I will produce a list of statements that had ‘consensus’, this means the people reading the statement, mostly agreed/disagreed with the statement. This list will be things that can be advised for NON-STOP moving forward, and will be used to make the NON-STOP app in the next part of the study.
If you want to read more about this study, see our resources below.
Participant information sheet (182kB pdf)
Summary of available evidence (65kB pdf)
NON-STOP Study 3 – Testing the NON-STOP app
Workstream 1 of the NON-STOP project told us what care for Perthes’ Disease has looked like in the past, and what people involved think should be in an app. Workstream 2 got experts around the country to agree on what we definitely need to do for children with Perthes’ Disease. Putting these two studies together, the NON-STOP app has been created and is about to be tested by children with Perthes’ Disease and their families.
In this final study of the NON-STOP project, children with Perthes’ Disease and their families will test the NON-STOP app. The app is designed to help people with the condition, look after themselves better in between their appointments. It has lots of information about the condition, and lots of questions that are normally asked by children with Perthes’ Disease or their families. It also has a section with exercises in it, and comes with videos on how to do the exercises too. Finally, it has an activity diary so people using the app know how much they’ve done each day.
We’ll be asking children to use the app for 6-weeks. We’ll be able to see how much the app has been used and which parts were used the most, but we know there’s more to learn with a new app. So, after using it for 6-weeks, we’ll ask a few of those who used it, to come and talk to us about using the app in something called a focus group. This is where a group of people come and answer questions together and talk about their experiences. After doing this, we’ll have a good idea about how useful the NON-STOP app is.
If you want to read more about the study, you can read our participant information sheet.