Non-QALY Benefits of Treatments of Alzheimer's Disease and Related Dementias

OBJECTIVES: The goal of this study is to identify important non-QALY benefits of novel Alzheimer’s Disease and Related Dementia (AD/ADRD) treatments. Cost-effectiveness analysis of AD/ADRD has been based on QALYs gained. However, other benefits in the ISPOR value flower, particularly benefits associated with severity of disease, hope and option value have not been included. Which of these benefits are most important for AD/ADRD is unknown and the topic of this study.

METHODS: We conducted twelve semi-structured focus groups with either older adults or caregivers. The focus group protocol/interview guide was designed to study participants’ knowledge of AD/ADRD and attitudes towards AD/ADRD. Approximately 60% of participants were at-risk individuals and 40% care givers. All focus groups were recorded and transcribed. Data was analyzed thematically with two coders using ATLAS.ti.

RESULTS: There was a lack of knowledge about both the condition and treatment options. When considering treatment options, cost and side effects were important, but the impact of the treatment on the family dynamics was also critical. Participants lack trust in advertising, are confused by the healthcare system, feel primary care providers are undertrained and lack time and specialists are unavailable. The system as a whole lacks coordination, fails to communicate effectively and provides conflicting information. Participants indicated AD/ADRD is associated with grief and sadness as well as fear, frustration and hopelessness. Both individuals and caregivers expressed feeling of being alone and confused. Caregiving at a distance presents a particular challenge.

CONCLUSIONS: Omitted elements of the ISPOR value flower are important for AD/ADRD, particularly hope and option value, suggesting the current estimates of the cost effectiveness of AD/ADRD medications may systematically undervalue important components of AD/ADRD treatments. Yet even with new AD/ADRD medications, access challenges may undermine the potential value by creating systematic challenges in receiving diagnoses and identifying treatment alternatives.