Development of Written Materials for Participants in an Alzheimer's Disease and Related Dementias Screening Trial. (April 2022)

• Record Type: Journal Article
• Authors: Head, Katharine J; Hartsock, Jane A.; Bakas, Tamilyn; Boustani, Malaz A; Schroeder, Matthew; Fowler, Nicole R
• Is Part Of: Journal of patient experience. Volume 9(2022)
• Publication Date: 2022-04
• Subjects: Alzheimer's disease -- dementia -- screening -- caregivers -- family -- communication -- self-determination theory -- best practices; Patient satisfaction -- Periodicals; Patient satisfaction -- United States -- Periodicals; Patient participation -- Periodicals; Patient participation -- United States -- Periodicals; Patient satisfaction; Patient participation; United States; 362.1068
• DOI: 10.1177/23743735221092573
• Languages: English
• ISSNs: 2374-3735

Abstract

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.