Development of a digital self-management intervention for the Non-Surgical Treatment of Perthes’ Disease: The NON-STOP app

Perthes’ Disease is an idiopathic avascular necrosis of the developing femoral head that causes joint deformity and significant impact on a child’s physical, mental and social health. In the children’s orthopaedic community, Perthes’ Disease is a top priority for further research. From a non-surgical perspective, there is widespread variation of care and there is no robust evidence to support any specific non-surgical approach, but it often includes physiotherapy and self-management. Patient and Public Involvement work in preparation for this PhD identified that a digital self-management intervention (an app) was an appropriate way to support the non-surgical treatment of Perthes’ Disease.

A mix of methods were used to deliver a digital self-management intervention for the non-surgical treatment of Perthes’ Disease (the NON-STOP app) and conduct feasibility testing in preparation for further evaluation. A clinical consensus study amongst children’s orthopaedic specialists provided recommendations for the non-surgical treatment of Perthes’ Disease. The findings of this study provided clinical content that was integrated into the NON-STOP app such as selection of exercises for children to complete and topics for the educational component within the app. During qualitative interviews with key stakeholders, including children with Perthes’ Disease, their families and the clinicians who care for them, experiences of existing care were shared. The NON-STOP app was created in collaboration with app developers and PPI input. Children and their families highlighted important features and aspects to improve engagement with the app. These ideas, such as rewards for the avatar ‘Bobby the Bone’ after using the app, were integrated into the design and development of the NON-STOP app. The app was tested in a mixed-methods feasibility study to explore its usability and acceptability. Children with Perthes’ Disease and their families engaged with the NON-STOP app and found it usable. Those who took part in the qualitative element of the study provided insight as to how engagement could be improved and sustained. Suggestions were made regarding intervention dosage and improved rewards.

Due to the methods employed, and most importantly, due to the involvement of relevant key stakeholders considered at every stage, it has been possible to design, develop and preliminarily test the NON-STOP app. It has been refined based on the findings of this project, with updates aimed to optimise engagement. Following this, it has now been integrated into a large, NIHR-funded, multi-centre, randomised clinical trial to compare the surgical and non-surgical treatment of Perthes’ Disease.