How should the results of Alzheimer's disease treatment trials be communicated to colleagues, patients, and families?

Abstract

The approval of amyloid-lowering therapies for Alzheimer's disease (AD) has increased the importance of clearly and precisely communicating complex clinical trial findings to patients, caregivers, clinicians, and the wider public. Because the clinical relevance of the modest treatment effects observed on cognitive and functional rating scales, which served as primary trial outcome measures, is uncertain and difficult to interpret, these effects have been translated into alternative quantitative interpretations, such as relative slowing of decline and time-saved estimates, and supplemented with qualitative descriptions and patient or caregiver testimonials. In this perspective, we examine the advantages and limitations of these approaches, with a particular focus on time-saved approaches, and discuss the assumptions required to move beyond reliance on directly observed primary outcome data from clinical trials. We argue that alternative methods of communicating treatment effects may improve accessibility but introduce additional uncertainty and may lead patients and clinicians to overestimate the size of benefit because they will not appreciate some of the assumptions on which these methods are based. Clear and accurate communication of treatment benefits, risks, limitations, and evidential uncertainty is essential to support informed decision making and maintain public trust in AD research and treatment.