Harnessing technology to support cough and secretion management in Motor Neuron Disease (MND): Co-design of an intervention to support clinical practice

Background: Saliva, secretion and cough problems affect up to 70% of people living with MND, significantly impacting quality of life. Healthcare professionals report difficulty managing these symptoms due to the multifactorial, interdisciplinary nature of care. This study aimed to develop a digitally enabled clinical intervention to support communication and co-ordination of cough and secretion care in MND.

Methods: A mixed methods study using the Double Diamond framework and behaviour change theory guided intervention development across four phases. The "Discover" phase investigated barriers and enablers to care through a literature mapping review, an online survey and focus groups with UK healthcare professionals, and semi-structured interviews with people with MND and caregivers. The "Define" phase applied reflexive thematic analysis alongside the COM-B model and Theoretical Domains Framework to identify behaviours influencing care. The "Develop" phase used co-design methodologies, including Experience Based Co-Design, to build the intervention.

Results: The "Discover" phase found that existing guidelines largely rely on expert consensus rather than robust evidence, and that healthcare professionals lack the disease-specific knowledge and confidence to implement therapeutic interventions. Understanding roles, responsibilities, and building relationships were identified as important enablers, while limited access to specialist care, equipment, and training represented key barriers. A structured clinical assessment was highlighted as essential to quality care. The "Define" phase identified behaviour change targets carried forward into the "Develop" phase. Six co-design workshops with a multi-stakeholder group shaped the scope, context, and design of a novel clinical intervention. The resulting intervention was developed for non-specialist MND healthcare professionals, incorporating an online assessment checklist and video technology.

Conclusions: A novel, digitally enabled intervention to support cough and secretion management in MND was successfully co-designed with stakeholders. Future research will evaluate its feasibility within UK clinical practice.