Ensuring Clinical Practice Guidelines Meet the Needs of the End-User: a Prioritization Survey for Guideline Topics for Behavioural and Psychological Symptoms of Dementia

Abstract

Background

Behavioural and psychological symptoms of dementia (BPSD) are complex to assess and manage, and a lack of updated clinical practice guidelines (CPGs) leads to variation in clinical practice. When generating CPGs, involvement of end-users in developing and prioritizing topics is key to creating effective recommendations.

Methods

To inform the creation of a CPG for the management of BPSD, we completed a Canada-wide online BPSD topic prioritization survey using Qualtrics. In January-March 2023 the survey was disseminated widely to identify preferred terminology to use in the guideline and to prioritize topics to be included.

Results

Two hundred fifty-four persons responded to the survey. Participants were mostly female (88.2%), identified as women (87.0%), were aged 50-64 (37.0%), from Ontario (69.7%), and from nursing roles (n=83). BPSD was the most preferred terminology (32.1%) followed by responsive behaviours (26.2%). Seven topics were reviewed for guideline inclusion, with priority placed on prevention, non-drug management, and prodromal symptoms. Comments from participants identified concerns around validity of detection tools, possible lack of available evidence, and conflict between standardized approaches versus the need for individualized care.

Conclusions

Involvement of end-users in the determination of terminology and prioritization of topics was an effectual way to ensure CPGs represent the needs of the user.