I am worth saving- A Qualitative Study of People with Alzheimers Disease Considering Lecanemab Treatment

Abstract

Importance People with Alzheimers disease (AD) now have access to disease-modifying treatment with anti-amyloid monoclonal antibodies (mAbs). Their perception of risks and benefits and approach to treatment decisions remain unknown. Objective To understand how people with early AD consider benefits and costs of anti-amyloid mAbs and make decisions about treatment. Design Qualitative semi-structured interviews Setting Memory care clinics at two academic medical centers Participants People with biomarker or imaging-confirmed early AD referred for evaluation for treatment with anti-amyloid mAbs Main Outcomes and Measures Themes identified through content analysis Results Among 22 participants, mean age was 70 years, 8 (36%) were women, 22 (100%) were White, 8 (36%) had less than a college degree, 11 (50%) had annual income less than $100,000, and 6 (27%) lived in a rural area. The analysis revealed 3 major themes and associated subthemes: 1) People with AD sought and obtained information from different sources: advocacy organizations, the Internet, and clinicians; 2) hopes, expected benefits, and the existential threat of dementia drove willingness and readiness to start lecanemab: hopes included more time feeling like themselves and doing enjoyable activities; expected benefits included stalling progression, reversing cognitive decline or cure; 3) individual traits and preferences, family factors, and degree of trust in expertise influenced how people balanced risks and benefits: some would accept treatment at any cost; others carefully weighed risks and burdens carefully, but were motivated to pursue treatment by supportive families, insurance coverage, and trust in expertise; for a few, costs decidedly outweighed their personal benefits. People with AD desired more individualized information on risks and benefits and wanted to hear more from patients who took the medication. Conclusions and Relevance Results from this qualitative analysis inform clinician, health system and policy efforts to promote individualized treatment decisions for anti amyloid mAb treatment through multimodal education and outreach, evidence-based communication skills, and adaptation of similar care models.

Competing Interest Statement

The authors have declared no competing interest.

Funding Statement

This study was funded by the National Institute on Aging (K76AG074919).

Author Declarations

I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

Yes

The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

The Institutional Review Board of Mass General Brigham gave ethical approval for this work

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Yes

I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).

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I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable.

Yes

Data Availability

All data produced in the present work are contained in the manuscript

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