Stakeholders’ Perspectives on Preclinical Testing for Alzheimer’s Disease

 

Jalayne J. Arias, Jeffrey Cummings, Alexander Rae Grant, and Paul J. Ford

 

Background and Aims

      Progress towards validating amyloid beta as an early indicator of Alzheimer’s disease (AD) heightens the need for evaluation of stakeholders’ perspectives of the benefits and harms of preclinical testing in asymptomatic individuals.

Methods

      Investigators conducted and analyzed 14 semi-structured interviews with family members of patients diagnosed with AD.

Results

      Participants reported benefits, including the potential to seek treatment, make lifestyle changes, and prepare for cognitive impairment. Participants identified harms, including social harms, adverse life decisions, and psychological harms. Nine participants reported either a “positive global perspective” or a “positive global perspective (qualified).”

Conclusion

      Results from this study characterized stakeholders’ perspectives on the potential benefits and harms of clinical use of preclinical testing for AD. Investigators used data from this study to develop a framework that contributes to ongoing discussions that will evaluate widespread adoption of preclinical testing and will inform future research.

 

 

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