Disclosing Alzheimer’s Disease Biomarker Results in Diverse Populations

Headshot of Annalise Rahman-Filipiak
Annalise Rahman-Filipiak, PhD

Dr. Annalise Rahman-Filipiak joins the podcast to discuss her research focused on disclosing neuroimaging biomarkers across diverse populations. She addresses why some people might want to know their biomarker results, while others might not, and how careful disclosure of these results to at-risk individuals may help prepare them and their families for the future through personalized treatment, research engagement, advanced planning and emotional support.

Guest: Annalise Rahman-Filipiak, PhD, assistant professor, neuropsychologist, department of psychiatry, University of Michigan

Show Notes

Learn more about Dr. Rahman-Filipiak on the University of Michigan’s website.

Read Dr. Rahman-Filipiak’s article, “Interest in and perceived benefits and risks of Alzheimer’s disease clinical and biomarker results disclosure among diverse participants and care partners,” at the journal Alzheimer’s & Dementia website.

Follow Dr. Rahman-Filipiak on Twitter @RahFlipPhD.

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Intro: I’m Dr. Nathaniel Chin, and you’re listening to Dementia Matters, a podcast about Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer's disease research and caregiver strategies. Thanks for joining us.

Dr. Nathaniel Chin: Welcome back to Dementia Matters. I'm with Dr. Annalise Rahman, an assistant professor and neuropsychologist in the department of psychiatry at the University of Michigan and works with the Michigan Alzheimer's Disease Research Center. Dr. Rahman is an Alzheimer's disease researcher with the research program on cognition and neuromodulation-based interventions, a program dedicated to finding non-drug treatments for cognitive and neurological impairments in older adults. Her research focuses on racial ethnic disparities in cognitive aging, as well as early detection of Alzheimer's disease. She is currently investigating health indicators and biomarkers for Alzheimer's disease and how careful disclosure of these results to at-risk individuals may help prepare patients and their families for the future through personalized treatment research engagement, advanced planning and emotional support. Annalise, welcome to Dementia Matters.

Dr. Annalise Rahman-Filipiak: Thanks

Chin: Before we discuss your presentation here at the Annual Spring ADC meeting, can you share with us how you became interested in Alzheimer's disease related research?

Rahman-Filipiak: I think that's a great question. I know there's a bit of a corny saying that “research is me-search,” but I do think it's true in my case. I may have come into this field because of personal experiences. I have a family history of Alzheimer's disease and vascular dementia on both sides of my family. So I became particularly interested in early detection and return of results or feedback because of some powerful experiences I had with receiving information and using that information to prepare and also not having enough information and how that affected our family.

Chin: You know Annalise, I think I've interviewed over 100 researchers and I've never heard “me-search" but I appreciate that education.I think it's very true. Now your presentation here at the conference was titled, “Disclosure of Imaging Biomarker Results in Cognitively and Ethno-Racially Diverse Populations”. What exactly does that mean and why does this diversity matter in science?

Rahman-Filipiak: Well in most research, including Alzheimer's disease and related dementia research, we ask individuals from the community or from our hospitals or clinics to take part in these studies and those studies help us better understand different elements of the disease or treatments for the disease. It's incredibly important that we're recruiting individuals from diverse backgrounds, whether that's racially ethnically diverse in terms of gender, sexual identity, etc. The reason that that's so important is because we need to make sure that the conclusions that we're drawing from these research studies actually apply to the general population, and that includes everyone in that population. Also important because we need to make sure that the questions we're asking in research actually align with what our communities care about rather than just what we think is important. Unfortunately we haven't done a great job of this historically speaking. Not only have we had relatively low racial and ethnic diversity in a lot of our research studies, but we also can ignore that there have been several historical ethical violations when it comes to recruiting and using biological samples from people from different racial-ethnic communities. I think we have a lot of work to do in terms of building the trust that's needed to bring everyone to the table.

Chin: When thinking about returning results to participants, do all the Alzheimer's disease research centers do it the same? Do the same thing? Do it the same way or what exactly is being shared?

Rahman-Filipiak: You know, it's a good question and I think we didn't really know until relatively recently. So about a year ago, a group of folks from the Alzheimer's disease centers, including Scott Roberts and others, published a paper where they essentially went back and asked all the Alzheimer's disease centers what they were doing in terms of sharing information that was collected in the different studies. They found that the majority of the centers are sharing cognitive test results and research diagnoses, sort of the standard information that you might get in a clinical setting. However, many centers are collecting these biomarkers, things like amyloid or tau from PET scans or other types of scans and that information is not being shared as frequently. Somewhere around 43% of amyloid results are being shared, but many fewer centers are sharing tau results and particularly to individuals who don't have cognitive symptoms at this time.

Chin: So for that PET imaging biomarker, whether it's amyloid or tau, why might some centers not want to disclose those results to participants?

Rahman-Filipiak: I think there are a few reasons. The first are purely practical. These are biomarkers that are really still under development in many cases. We don't have clear clinical cutoffs for what's considered an elevated versus a non-elevated biomarker. We're still really trying to validate those. Going back to the issue of diversity, we have not had huge diversity in our samples which means that we don't know if this is really a good one-size fits-all cutoff for everyone. There are also few published protocols on how to share this information. There's a question about whether it's feasible, whether we can be effective in sharing this information with participants, and whether we can do so safely. Lastly, you know there's always going to be concerns about liability or risk. We want to make sure our participants are safe and that we're not doing anything that would increase psychological distress or basically amount to negative outcomes for our participants. We have concerns about that.

Chin: On the flip side, though, why might research studies or programs want to share PET imaging results with their participants?

Rahman-Filipiak: I think a big part of it is that we do know that there are potential positive outcomes that can arise from having this information. Several studies, including studies like the IDEASstudy, have found that when participants decide to share their biomarker information with their medical providers that increases diagnostic confidence, treatment personalization. On the more personal participant level, we know from REVEAL-SCAN and other studies that really people can use this to plan behavior change. If I find out I'm at risk, I can maybe engage in kind of closely monitoring my diet and engaging in more exercise. I can prepare for the future by looking at long-term care insurance plans. Another factor to consider is how families might use this information, how care partners might be better able to prepare for their roles financially or practically if they know that their loved one is at risk. But I think in a larger context, an important consideration is that sharing these results can really help improve transparency and trust-building with our communities, so giving something back to participants and letting them know that we care about their outcomes post-study.

Chin: In your presentation, you highlighted your work in exploring the question of our diverse participants and their family members interested in learning about other risk indicators or biomarker results. What exactly did you find in your study?

Rahman-Filipiak: In our study we looked at 57 dyads, so these were participants who had either mild cognitive impairment or were cognitively healthy, and then their current care partners or the person that would serve as a care partner if they ever needed it. We basically asked them a range of questions to figure out whether they were interested in learning different types of health information. So, the standard information, cognitive test results, and research diagnosis as well as things like their MRI results, that would tell us a little bit about how their brain structures are looking, genetic results, and these more sort of exploratory biomarkers, amyloid and tau, from PET imaging. What we found is that regardless of diagnosis, regardless of whether participants or dyads were black or white, there was strong interest in all levels of this information, all types of health indicators. Among co-participants, or care partners, we saw a slightly different pattern. Basically we still saw moderate interest in all of these pieces of information. However, we did see a race effect where Black care partners were slightly more wary or hesitant about their loved ones receiving their results, which might reflect some of that mistrust that we talked about earlier.

Chin: In this work, you also found that the motivators, or the reasons for wanting results, varied between Black participants and white participants. So what differences did you find?

Rahman-Filipiak: We looked at a variety of different factors. The way that we addressed this question was essentially to ask our dyads: why would you want to receive your biomarker information? We also provided them with a list of reasons that we thought might be motivating and then we had them select all and then basically select their main motivator. What we found is that there are just hugely varied responses on this item. People really want this information for very specific and diverse reasons. Some people, and most commonly, people stated that they would like to engage in clinical trials or research studies, they would like to be able to modify treatment so they're more personalized, and then again engage in advanced planning. But there were no differences by race, for either participants or care partners. Again, huge diversity in why people are asking for this information, which really speaks to a need to tailor our biomarker disclosure protocols.

Chin: It wasn't all different though. It seemed both groups of people had limited concerns about learning this information, but we know that there are some implications of this or at least that's what we're studying and you in particular. What are your takeaways from this fact and are you worried about anything in doing disclosures?

Rahman-Filipiak: Absolutely, you know we wanted to be able to ask about whether the risks that we consider as researchers are shared by our participants and care partners. We found that around 80% of both participants and care partners indicated that there was no barrier, no risk, that would make them want to hesitate in receiving this information. While I think that does mirror what we're seeing – very strong interest, a belief that they should have this information – I also think it highlights maybe a lack of understanding of what those risks might be practically, emotionally, etc, which speaks to our need to educate individuals before they engage in biomarker testing and also make sure that they are able to make an informed decision because we're thinking about participants who are at risk for or may already have some cognitive difficulties. It's our responsibility to make sure that they're understanding both benefits and risks.

Chin: And I think that's really well said, Annalise, because it's not about paternalism, if we know better. It's about how we may know the consequences that other people are experiencing, since we're seeing a large group of people, and simply educating and allowing them to be informed and then make their own decision.

Rahman-Filipiak: Absolutely.

Chin: So in your next research study, you created a protocol for disclosing both amyloid PET and tau PET results to people with some form of cognitive impairment, be it mild cognitive impairment or dementia. What did you learn in that process of creating the protocol?

Rahman-Filipiak: I think if I have to come up with one message, it's that one size fits all is not true, that approach is not going to work with this kind of disclosure. We really have to consider the factors that are motivating individuals to take part: family involvement, demographic factors, access to care, all of those sorts of things. So we have to be able to create a feedback mechanism or protocol that's structured enough to do in a research setting, where we have pretty strict parameters, but also tailored enough to meet participants' needs. Then I also think a big part of it was an emphasis on education before we go through with disclosure. So making sure that we are really fully engaging with participants and sharing those risks and benefits.

Chin: Two things that I took away from your presentation were that education is key and having a lot of information available but being able to explain that in understandable terms, but then two: whether it's creating your own resources or working with community organizations to have resources, because you have a wonderful array of materials for people on various brain health facts or organizations to get involved in, and I can imagine then learning information about oneself that could increase risk for Alzheimer's disease. Then also having access to this well-organized group of information that you've provided is reassuring to people. Is that something you found?

Rahman-Filipiak: I think that's absolutely true. We really found that individuals post-disclosure, we expect they'll have a range of different reactions and their ability to feel some control or efficacy over those actions is really important. Part of that is in the absence of really many approved treatments to halt or reverse symptoms of Alzheimer's disease, it's important that we can give them some guidelines around health behavior change, around support groups and resources, around education. We wanted to be able to create these packets that are very tailored and accessible to give people next steps.

Chin: In your last study presented at the conference, you share findings on what actually happened when you disclose these results to research participants. Highlight for us what you found in how participants experienced this type of disclosure.

Rahman-Filipiak: What we did is, we looked at two different basic elements: comprehension or recall of results, so how well they understood what we were sharing with them, as well as the safety of those results. In terms of comprehension, we know that both participants and co-participants are pretty well able to recall what they were told during their feedback or disclosure session. It was a bit harder for them to interpret the meaning of that information. What we found is that while there were no significant differences for participants in terms of how well they understood and recalled the information, among co-participants, the co-participants or care partners of those who received elevated results were much better able to understand and remember that information over time when we followed them for six weeks. I think this is pretty expected given that when we find out that our loved one is at risk for something or has elevated test results, that's probably pretty salient to us. I think it does speak to some need to tweak the way we're sharing this information so it's more understandable, but also does tell us that we're doing a decent job of sharing this really complex health information in a way that people can kind of comprehend it. In terms of safety, we did look at anxiety, depression and basically test-related distress among participants and care partners. We split this again by individuals who received elevated biomarker results versus not elevated biomarker results. We saw no real differences in level of anxiety or level of depression, which is really promising because I think there is a concern that potentially individuals with elevated results may be more depressed. It may result in increases in suicidality or other negative thoughts. And we really didn't see that in this sample. When it came to test-related distress, we saw a pattern that was exactly the same for care partners and for participants, which is basically that individuals who received negative results or – excuse me – elevated results really did have slightly higher test-related distress, at least preliminarily, tended to get better over time. Interestingly, when we looked at positive emotions post-disclosure, we see that, perhaps as expected, individuals who have not elevated results indicating a lower risk for Alzheimer's disease reported more positive emotions after disclosure, but not a single participant nor co-participant/care partner reported any level of regret about engaging in biomarker disclosure regardless of what the result was. I think that really speaks to this question that we have about receiving elevated results will significantly change someone's perspective on whether they wish they'd gone through with the process.

Chin: Annalise, so in thinking about the work you've done, from talking to people about their willingness to learn biomarker results, to developing the protocols,to actually disclosing, what have you concluded?

Rahman-Filipiak: People want this information. Not only because they see it as actionable and useful, but also because they see it as this act of reciprocal trust building or partnership with research studies. It is a way for us to build a bridge and I think that we need to think about it as researchers motivated to recruit and retain individuals into our studies, but also just from the human aspect. Also feedback like this can be an intervention unto itself. It's a way to help educate people about changes that they can make to reduce their risk or rate of decline. It also helps care partners prepare for the future. It can have really significant impacts and so I think it's really our responsibility, as part of this ADC network and also part of this larger Alzheimer's disease research network, to prioritize this and to think about how to do this effectively in a culturally sensitive way. So on that note, the last thing that I think I take from this is that we don't know everything. We don't do everything well all the time. We're still learning how to share information effectively. So, if we can incorporate cultural humility into our research practice and really gather information from our community members, from our past participants, etc, we are much more likely to be successful in aligning with our communities to advance research in Alzheimer's disease.

Chin: To end, what's next in this line of work for you? And where are the areas of need requiring more of our attention?

Rahman-Filipiak: As I mentioned at the beginning, I think recruitment of diverse individuals will allow us to come up with those cut points for these different biomarkers that are really informed by a range of social, cultural, contextual factors. Additionally, I think it's important for us to consider collecting more information from participants long-term. How do they use this information? How does it change their lives? What are the risks associated with it in real life? Are some of our concerns actually happening? I also think one interesting area are some of the newer biomarkers. We've talked a little bit about PET scans but there are some new tests, blood tests and other sorts of tests for biomarkers that are coming into development. And I think it's important that we consider that there will probably at some point be some kind of direct-to-consumer blood test option, so we need to get ahead of that. We need to make sure that we can disclose and discuss this information in a helpful way before you know we get cut out.

Chin: Well, thank you Annalise for coming on Dementia Matters and for your presentation at the Spring Annual ADC meeting. I'm certain we're gonna have you on in the future.

Outro: Thank you for listening to Dementia Matters. Follow us on Apple Podcasts, Spotify, Google Podcasts, or wherever you listen or tell your smart speaker to play the Dementia Matters podcast. Please rate us on your favorite podcast app -- it helps other people find our show and lets us know how we are doing. Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center at the University of Wisconsin--Madison. It receives funding from private, university, state, and national sources, including a grant from the National Institutes of Health for Alzheimer's Disease Centers. This episode of Dementia Matters was produced by Amy Lambright Murphy and Caoilfhinn Rauwerdink and edited by Taylor Eberhardt. Our musical jingle is "Cases to Rest" by Blue Dot Sessions. To learn more about the Wisconsin Alzheimer's Disease Research Center and Dementia Matters, check out our website at adrc.wisc.edu, and follow us on Facebook and Twitter. If you have any questions or comments, email us at dementiamatters@medicine.wisc.edu. Thanks for listening.