Title: Non-Surgical Treatment of Perthes' disease in children.
Funder: Health Education England

Abstract: Background The non-surgical treatment of Perthes' Disease (NON-STOP) project is aimed at improving the outcomes of affected children. Perthes' Disease is an idiopathic childhood disease of the hip, which disproportionately affects socioeconomically deprived children in northern England. During the active disease process, children are often in pain, and typically develop walking difficulties, limiting their activity. Some may be left with significant bony damage following resolution of the disease process, potentially requiring hip replacement surgery. Recent research demonstrates the importance of the NON-STOP project. A multicentre review showed considerable variation in care in the UK, whilst a systematic review has highlighted a dearth of high-quality research relating to the benefits of non-surgical treatments. The NON-STOP project aims to provide an effective, accessible, and engaging self-management option for children with Perthes' Disease. A digital format will offer the opportunity to reduce healthcare costs and minimise treatment burden for children and their families. It will also allow children/families to take a more independent approach to their care. This is expected to limit both the short-term impact of the disease process, and mitigate the long-term risks to health and wellbeing. Aim Utilise the experiences and recommendations of key stakeholders to develop a digital self-management intervention for the non-surgical treatment of Perthes' Disease, and assess its usability and acceptability in preparation for future research. Objectives Investigate the experiences and understanding of children/families and clinicians when considering non-surgical treatments for Perthes' Disease. Develop a theoretically-grounded, evidence-based digital 'NON-STOP' intervention to support self-management for children with Perthes' Disease and their families. Test the feasibility and acceptability of a digital self-management NON-STOP intervention for children/families and clinicians; and to clarify methodological uncertainties prior to undertaking a subsequent definitive randomised controlled trial.Methods The NON-STOP project will include: Qualitative interviews - key stakeholders will help develop understanding of NON-STOP and decisions made when selecting treatment. Months 4-16. Evidence synthesis -h; an umbrella review to identify evidence that informs the optimal content for a digital self-management intervention. Months 10-15. Modified Delphi study -h; to gain consensus-based recommendations on the content and delivery of non-surgical treatment to improve clinical outcomes for children with Perthes' Disease. Months 16-24. Before and after observational study and mixed-method process evaluation with qualitative interviews -h; to test the feasibility and acceptability of implementing the NON-STOP intervention with children/families. Months 22-41.Anticipated impact The NON-STOP project will address an important gap in the knowledge surrounding non-surgical treatment of Perthes' Disease and help inform future trials. It will improve children and their family's ability to self-manage the condition, which has potential benefits for the quality of life of these children. Dissemination The NIHR YPAG and project advisory group will play a key role in the dissemination of NON-STOP. This will likely include child-friendly plain English summaries, social media outputs, publications in peer-reviewed journals and presentations at relevant conferences/events. The strategy will be optimised to maximise the impact on children with Perthes' Disease and their families.

Lay abstract: 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. This programme of research aims to address some of these challenges. With the support of children and their families and clinicians, I plan to develop a digital rehabilitation programme of care, which is accessible for all children with Perthes' Disease. In this study I 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. Working with children with Perthes' Disease, their families and healthcare professionals I will develop digital content based on the best evidence. I will make sure it is acceptable to children, families and healthcare staff. I will test the digital app in local hospitals to make sure it does what we want it to do. Based on the results, I expect to develop a more detailed research project for future research beyond this CDRF that will compare the effectiveness of the new rehabilitation programme to other treatments.PPI The NIHR Young Person's Advisory Group (YPAG) at Leeds and Alder Hey Children's Hospitals have both helped to develop the study so far, including contributing to this summary. In particular they have helped consider ways to present information digitally, made suggestions for how to make physiotherapy fun and to allow children to have some control over their own care. The young people themselves also named the study (NON-STOP; Non-Surgical Treatment Of Perthes' Disease) and designed the study logo. I will continue to work with them throughout this project to ensure they play a key role in the design and delivery. DisseminationI will make sure that the results are shared with the parents and children involved in its design and testing. I will produce articles to be published in medical journals as well as information to share with YPAG and other groups who support children with Perthes' Disease and other hip conditions, and through social media. I will ensure that the results are fed back in a 'fun' child-friendly way, reflecting how information is given to children throughout the study - using videos and electronic leaflets.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;7.3 MANAGEMENT AND DECISION MAKING
Health categories: MUSCULOSKELETAL