Assessing What Matters to People Affected by Alzheimer's Disease: A Quantitative Analysis

Brett Hauber; Russ Paulsen; Holly B Krasa; George Vradenburg; Meryl Comer; Leigh F Callahan; John Winfield; Michele Potashman; Ann Hartry; Daniel Lee; Hilary Wilson; Deborah L Hoffman; Dan Wieberg; Ian N Kremer; Geraldine A Taylor; James M Taylor; Debra Lappin; Allison D Martin; Terry Frangiosa; Virginia Biggar; Christina Slota; Carla Romano; Dana B DiBenedetti

doi:10.1007/s40120-023-00445-0

Assessing What Matters to People Affected by Alzheimer's Disease: A Quantitative Analysis

Neurol Ther. 2023 Apr;12(2):505-527. doi: 10.1007/s40120-023-00445-0. Epub 2023 Feb 10.

Authors

Brett Hauber¹, Russ Paulsen², Holly B Krasa³, George Vradenburg², Meryl Comer², Leigh F Callahan⁴, John Winfield⁴, Michele Potashman⁵, Ann Hartry⁶, Daniel Lee⁷, Hilary Wilson⁸, Deborah L Hoffman⁹, Dan Wieberg¹⁰, Ian N Kremer¹¹, Geraldine A Taylor¹², James M Taylor¹², Debra Lappin¹³, Allison D Martin¹³, Terry Frangiosa², Virginia Biggar², Christina Slota¹, Carla Romano¹, Dana B DiBenedetti¹⁴

Affiliations

¹ RTI Health Solutions, 3040 Cornwallis Road, PO Box 12194, Research Triangle Park, NC, 27709-2194, USA.
² UsAgainstAlzheimer's, Washington, DC, 20043, USA.
³ Blue Persimmon Group LLC, Washington, DC, 20016, USA.
⁴ University of North Carolina, Chapel Hill, NC, 27599, USA.
⁵ Biogen Inc, Cambridge, MA, 02142, USA.
⁶ Lundbeck LLC, Deerfield, IL, 60015, USA.
⁷ Otsuka Pharmaceutical Development and Commercialization Inc., Princeton, NJ, 08540, USA.
⁸ Boehringer Ingelheim, Burlington, ON, L7L 5H4, Canada.
⁹ Takeda Pharmaceuticals, Cambridge, MA, 02139, USA.
¹⁰ Home Instead Inc, Omaha, NE, 68154, USA.
¹¹ LEAD Coalition (Leaders Engaged on Alzheimer's Disease), Washington, DC, 20043, USA.
¹² Memory Advocate Peers (MAP), New York, NY, 10023, USA.
¹³ Faegre Drinker Consulting, Washington, DC, 20001, USA.
¹⁴ RTI Health Solutions, 3040 Cornwallis Road, PO Box 12194, Research Triangle Park, NC, 27709-2194, USA. ddibenedetti@rti.org.

Abstract

Introduction: In this phase of the ongoing What Matters Most study series, designed to evaluate concepts that are meaningful to people affected by Alzheimer's disease (AD), we quantified the importance of symptoms, impacts, and outcomes of AD to people at risk for or with AD and care partners of people with AD.

Methods: We administered a web-based survey to individuals at risk for or with AD (Group 1: unimpaired cognition with evidence of AD pathology; Group 2: AD risk factors and subjective cognitive complaints/mild cognitive impairment; Group 3: mild AD) and to care partners of individuals with moderate AD (Group 4) or severe AD (Group 5). Respondents rated the importance of 42 symptoms, impacts, and outcomes on a scale ranging from 1 ("not at all important") to 5 ("extremely important").

Results: Among the 274 respondents (70.4% female; 63.1% white), over half of patient respondents rated all 42 items as "very important" or "extremely important," while care partners rated fewer items as "very important" or "extremely important." Among the three patient groups, the minimum (maximum) mean importance rating for any item was 3.4 (4.6), indicating that all items were at least moderately to very important. Among care partners of people with moderate or severe AD, the minimum (maximum) mean importance rating was 2.1 (4.4), indicating that most items were rated as at least moderately important. Overall, taking medications correctly, not feeling down or depressed, and staying safe had the highest importance ratings among both patients and care partners, regardless of AD phase.

Conclusion: Concepts of importance to individuals affected by AD go beyond the common understanding of "cognition" or "function" alone, reflecting a desire to maintain independence, overall physical and mental health, emotional well-being, and safety. Preservation of these attributes may be key to understanding whether interventions deliver clinically meaningful outcomes.

Keywords: Alzheimer’s disease; Caregiver; Clinical meaningfulness; Outcomes; Patient; Preference; Value.