Development of Written Materials for Participants in an Alzheimer's Disease and Related Dementias Screening Trial

Given that participants’ experiences in clinical trials include a variety of communication touchpoints with clinical trial staff, these communications should be designed in a way that enhances the participant experience by paying attention to the self-determination theoretical concepts of competence...

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Bibliographic Details
Published in:Journal of patient experience 2022-04, Vol.9, p.23743735221092573
Main Authors: Head, Katharine J, Hartsock, Jane A., Bakas, Tamilyn, Boustani, Malaz A, Schroeder, Matthew, Fowler, Nicole R
Format: Article
Language:English
Subjects:
Alzheimer's disease
Dementia
Medical screening
Psychological tests
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Summary:Given that participants’ experiences in clinical trials include a variety of communication touchpoints with clinical trial staff, these communications should be designed in a way that enhances the participant experience by paying attention to the self-determination theoretical concepts of competence, autonomy, and relatedness. In this feature, we argue that clinical trial teams need to consider the importance of how they design their written participant communication materials, and we explain in detail the process our multidisciplinary team took to design written materials for the patient and family caregiver participants in our Alzheimer's disease and related dementias (ADRD) screening trial. This article concludes with suggested guidance and steps for other clinical trial teams.
ISSN:2374-3735
2374-3743
DOI:10.1177/23743735221092573