How do we put meaning into meaningful benefit? Perspectives from the lived experience

Area of Science:

• Neuroscience
• Gerontology
• Clinical Trials

Background:

• Meaningful benefit in Alzheimer's disease (AD) is often defined by clinician or care partner impressions, potentially overlooking the perspectives of people living with AD (PLWAD).
• Existing clinical outcome assessments may not fully capture the experiences and priorities of PLWAD.

Purpose of the Study:

• To develop a framework for understanding meaningful benefit in AD that incorporates the lived experiences of PLWAD and their care partners.
• To identify key concepts and domains important to PLWAD and care partners across the AD continuum.

Main Methods:

• Utilized interviews and surveys from the What Matters Most (WMM) research program involving PLWAD and care partners.
• Developed a conceptual model based on PLWAD and care partner input, encompassing 50 concepts across six domains.

Main Results:

• The WMM conceptual model identified six key domains: social life/activities, thought processing, communication, daily activities, mood/emotion, and general independence.
• PLWAD and care partners defined meaningful benefit as an increase in time to the onset, development, or worsening of symptoms within these identified concepts.

Conclusions:

• A patient-centered approach is crucial for defining meaningful benefit in AD clinical trials and research.
• Integrating the perspectives of PLWAD and care partners into outcome assessments is essential for capturing what truly matters to individuals affected by Alzheimer's disease.