The Values and Preferences of People Living With Motor Neurone Disease (MND): A Systematic Review Protocol

ABSTRACT Objective To systematically review the values and preferences of people with lived experience of motor neurone disease (MND), including those living with MND, caregivers and genetic carriers, regarding their health‐related outcomes. Introduction MND is a devastating neurodegenerative disease that significantly impacts those living with the disease, their caregivers, and their families. Understanding the values and preferences of those affected by MND is crucial for providing patient‐centred care and developing trustworthy guidelines. Eligibility Criteria Studies will be included if they report on the values and preferences of adults living with MND; caregivers and families of those diagnosed with MND; clinicians as a proxy for adults living with MND; or asymptomatic genetic carriers of MND. Peer‐reviewed studies utilising either quantitative or qualitative methodologies (or both) will be eligible for inclusion in this review. Methods and Analysis A comprehensive search of electronic databases will be conducted to identify relevant studies. Data extraction, risk of bias assessment (of quantitative studies), and assessment of methodological limitations (of qualitative studies) will be performed independently by two reviewers. Quantitative data will be pooled using meta‐analysis where appropriate, and qualitative data will be synthesised following a modified meta‐aggregative approach. The relevant GRADE approach will be used to assess the certainty of evidence. Systematic Review Registration Number CRD420250653287. Summary This protocol outlines the methods and processes to undertake the first systematic review designed to synthesize evidence on the health‐related values and preferences of the motor neurone disease (MND) community. The review will seek to understand what health outcomes are most important to people with lived experience of the disease. The protocol is specific to an inclusive population of adults with MND, caregivers, and genetic carriers. It details a comprehensive plan for study selection, data extraction risk of bias assessment, assessment of the certainty of the evidence following GRADE methodology. The purpose of this review is to generate crucial evidence to inform the development of trustworthy guidelines, and will directly contribute to the Australian MND Guideline, ensuring recommendations reflect the priorities of those affected by the disease.