Examining how people with lived experience of neurodegenerative diseases have been included in trustworthy guidelines: a scoping review protocol

Objective: To examine how people with lived experience of neurodegenerative disease are being included in the development of trustworthy guidelines. Introduction: Meaningful inclusion of people with lived experience ensures that guidelines are relevant and implementable. People living with neurodegenerative diseases experience progressive cognitive, physical, and communication impairments, which create significant barriers to participation in guideline development. However, involvement is often tokenistic and does not consider the complex challenges associated with neurodegenerative diseases. Inclusion criteria: The review will include published and unpublished trustworthy guidelines and their associated methods papers from 2010 onwards if they relate to the care or treatment of people with lived experience of neurodegenerative diseases (>18 years) and describe their methods for inclusion. No restrictions were placed on geographic location or language. Methods: A scoping review will be conducted using JBI methodology. A 3-step search strategy will be conducted to locate both published and unpublished documents. An initial search of PubMed was developed with a librarian, which identified keywords and MeSH terms. A second search of MEDLINE (Ovid), CINAHL (EBSCOhost), and Episkimonons will follow. Websites and guideline libraries, including Guidelines International Network, and NICE, will be searched for difficult-to-locate and unpublished literature. Two reviewers will independently screen title and abstract and full text, with particular attention to equity, diversity and accessibility considerations. The results will be analysed using frequencies and qualitative content analysis and presented through tables. The findings from this review will be used to develop best-practice principles and standards to include people living with neurodegenerative diseases in the development of trustworthy guidelines.