How do we put Meaning Into Meaningful Benefit? Perspectives From the Lived Experience

Faegre Drinker Consulting principal Terry Frangiosa co-authored a report for the Alzheimer’s Association titled “How do we put Meaning Into Meaningful Benefit? Perspectives From the Lived Experience.”

The report explained that the concept of meaningful benefit in Alzheimer's disease (AD), or benefit to a patient’s well-being based off of their treatment, has been widely debated. Research often re\lies on change thresholds based on clinicians’ or care partners’ impressions, which may not fully reflect the perspectives of people living with AD (PLWAD). To address this gap, the What Matters Most (WMM) research program integrates the lived experiences of PLWAD and their care partners with clinical outcomes to establish a framework for meaningful benefit in terms of symptoms, functioning, and outcomes. The WMM program developed a conceptual model of disease through interviews and surveys with PLWAD and care partners, identifying six key domains—social life/activities, thought processing, communication, daily activities, mood/emotion, and general independence—and highlighting 50 important concepts. An increase in time before the onset or worsening of symptoms across these areas was considered meaningful by PLWAD and care partners.

"No single commonly used clinical outcome assessment captures all concepts of importance, nor the importance of time in AD; considering the lived experience and priorities of individuals affected by AD is crucial to put the 'meaning' in 'meaningful,'" Frangiosa explained. “This underscores the need for a patient-centered approach to assess meaningful benefit and prioritize the unique perspectives of PLWAD and their care partners.”