Transparent Disclosure of AD Biomarker Results to Patients and Caregivers

By Joey Dupree, IOA Intern

Jennifer H. Lingler, PhD, CRNP, FAAN, a Professor of Nursing and Psychiatry at the University of Pittsburgh spoke at the 2023 IOA Retreat to discuss how practitioners can be responsibly transparent towards patients and their caregivers regarding Alzheimer’s Disease (AD) biomarker results. 

Dr. Lingler is motivated to effectively communicate AD biomarker results in a way that is not only transparent, but also clear and easy to understand. Dr. Lingler experienced firsthand the impact of ineffective communication of patient results on the caregiver and patient as a bystander. During her talk, Dr. Lingler reminisced on a personal experience in which she noticed the impact of word choice on a patient's perception of their condition. While attending an appointment with her grandparents for an update on her grandmother's condition following a cancer diagnosis, the oncologist termed her grandmother's cancer as “progressing” and suggested stopping chemotherapy and continuing radiation therapy. Following the news, Dr. Lingler's grandmother went on to lunch in high spirits. Dr. Lingler quickly realized that the term “progressing” seemed positive to her grandparents and that they didn’t truly grasp what the oncologist was trying to communicate regarding the results. This experience inspired Dr. Lingler to shed light on the importance of effective communication regarding medical results and how they are explained to patients and caregivers.

During Dr. Lingler’s post-doctoral fellowship she worked on developing the Conceptual Model of Communication Process which aimed to aid in mediating communication between providers and patients with cognitive impairments while emphasizing unmeasured factors that contribute to the goals of the provider and patient and how patients interpret messages that are conveyed by the provider. 

More recently, Dr. Lingler's work focuses on Alzheimer's disease (AD) biomarker results. Dr. Lingler considers these results to be "high stakes medical communication" because of the way that these results and data are conveyed to patients and family members as well as how they are portrayed in the media. She explained that even NIH reviewers define AD biomarker results as “complicated”, “raises questions”, and a “risk”.

When examining high stakes medical communication such as AD biomarker results, Dr. Lingler emphasizes a few risks that could occur in biomarker result disclosure such as a patient receiving a false positive or negative, misunderstanding, psychological harm, discrimination/stigma, and poorer subsequent cognitive testing. However, some of these risks were evaluated in the REVEAL study led by Robert Green at Harvard University which noted that APOE genetic test results are only apparently distressing when individuals had higher levels of mood symptoms at baseline and even in these individuals, they saw those symptoms dissipate over time. This raises the question of whether there is any benefit to not fully disclosing AD biomarker results to patients.

Dr. Lingler references the Return of Amyloid Imaging Scan Results (RAISR) study done at the University of Pittsburgh to examine if patients with MCI benefit from being disclosed their amyloid scan results. The study showed that patients with pre-existing mood disorders saw no change in depressive or anxiety-like behaviors after receiving their results and that patients with amyloid positive results did see a rise in negative mental health effects but were found to be able to cope with an amyloid positive result similarly to those without pre-existing mood disorders.

While there is still more work to do to truly determine the best way to disclose AD biomarker results to patients, there seems to be more benefits to disclosing AD biomarker results than not fully disclosing results. In the future Dr. Lingler will be collaborating with Dr. Joshua Grill from the University of California; Irvine on the PARADE method which aids to find potential value and drawbacks of amyloid biomarker results in a real world setting to aid in representing more diverse patient populations, a drawback Dr. Lingler mentioned occurred in previous studies. Dr. Lingler will also be working on a study examining “SCANxiety” to examine if there is more anxiety during the time a patient is waiting for biomarker results versus result disclosure.