A mixed-methods approach to optimise pain assessment and management in motor neurone disease (MND): developing a UK clinical practice framework

Why is the research needed?

Pain can significantly affect the quality of life for people with MND, and their families. Despite its prevalence, pain in MND is often underestimated and undertreated. Due to a lack of evidence, current pain management methods vary significantly and there are no specific national guidelines for MND pain assessment. The absence of both national and detailed international guidelines underscores the urgent need for further research to identify optimal and evidence-based approaches to alleviate this often overlooked symptom in people with MND.

What are we doing?

Our project aims to improve understanding and optimise pain assessment and management pathways within UK healthcare services, via a multi-workstream approach that includes: 

• surveying healthcare professionals and MND centres to map current practices
• conducting qualitative interviews with patients, caregivers, and healthcare professionals to understand their experiences, preferences and expectations
• critically appraising existing pain patient reported outcomes for suitability in MND
• undertaking a longitudinal cohort study to quantify pain prevalence and burden with real-word data. 

Finally, we will synthesise these findings to develop an evidence-based, patient-centred pain assessment and management pathway, with significant potential to standardise clinical practice and improve the quality of life for people with MND.

How are we working with communities, services and organisations?

People with MND and their carers are central to this project. Their direct experiences and input will be key to shaping our understanding and developing a truly patient-centred pain management plan. We will develop and regularly review our impact and dissemination strategy via ongoing dialogue with our PPI group and the MND Association.

What will the impact and benefits of this research be?

We aim to produce an evidence-based clinically relevant pain assessment pathway to optimise care, developed through a combined top-down and bottom-up approach, reflecting both the perspectives and expertise of HCPs, and the lived experiences, expressed needs, and preferences of individuals living with MND and their carers.

What do we have planned for knowledge mobilisation and implementation?

Our project plan is informed by the Knowledge to Action (KTA) framework to ensure our findings are not only shared but actively utilised to improve care for people with MND. We have conducted stakeholder mapping to ensure our findings translate effectively into practice, and in alignment with the KTA framework’s cycles of knowledge creation and action, each workplan will produce outputs designed for optimal reach and impact that will be co-developed with our PPI group

Related papers, outputs and resources

Outputs will be added when available.