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

Authors

Lara Stollery, Emma Muhlack, Zachary Munn, Danielle Pollock

Published in

JBI evidence synthesis. Jul 27, 2026. Epub Jul 27, 2026.

Abstract

This review will examine how people with lived experience of neurodegenerative diseases are being included in the development of trustworthy guidelines.
Meaningful inclusion of people with lived experience ensures that guidelines are relevant and implementable; however, people living with neurodegenerative diseases experience progressive cognitive, physical, and communication impairments, which create significant barriers to participation in guideline development. Their involvement is often tokenistic and does not consider the complex challenges associated with neurodegenerative diseases. The findings from this review will be used to develop best-practice principles and standards for their inclusion in guideline development.
This review will include trustworthy published and unpublished guidelines, and their associated methods papers, related to the care or treatment of people (≥18 years of age) with lived experience of neurodegenerative diseases. Eligible guidelines must describe the methods for inclusion of people with lived experience of neurodegenerative diseases. No restrictions will be placed on geographic location or language.
This review will follow the JBI methodology for scoping reviews and will be reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Searches will be conducted in MEDLINE (Ovid), CINAHL (EBSCOhost), and Epistemonikos for sources published from 2010 onward. Websites and guideline libraries, including Guidelines International Network and the National Institute for Health and Care Excellence, will be searched for difficult-to-locate and unpublished literature. Two reviewers will independently screen titles, abstracts, and full texts, with attention to equity, diversity, inclusion, and accessibility considerations. The results will be analyzed using frequencies and qualitative content analysis and presented through tables.
OSF https://osf.io/j2ey5/.

PMID:
42515948
Bibliographic data and abstract were imported from PubMed on 28 Jul 2026.

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