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| Funder | Non-NIHR funding |
|---|---|
| Recipient Organization | University of Leeds |
| Country | United Kingdom |
| Start Date | Apr 01, 2021 |
| End Date | Dec 31, 2024 |
| Duration | 1,370 days |
| Number of Grantees | 2 |
| Roles | Award Holder |
| Data Source | NIHR Open Data-Funded Portfolio |
| Grant ID | NIHR301582 |
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 - an umbrella review to identify evidence that informs the optimal content for a digital self-management intervention. Months 10-15.
Modified Delphi study - 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 - 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.
University of Leeds
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