Thanks for your feedback, this will help us improve our content for you!
AD/PD 2023 | Sex and gender differences in the Alzheimer’s disease patient journey
Frances-Catherine Quevenco, PhD, Women’s Brain Project, shares the preliminary findings from an ongoing study looking at the patient journey in patients with Alzheimer’s disease (AD) through a sex and gender lens. The study was conducted in 142 patients within the US and Germany, who were surveyed on their experiences at different milestones across their disease journey. The preliminary results showed key differences in diagnostic pathways, with males having a shorter time to diagnosis and being more likely to see a specialist early on, whereas females were more likely to go through the GP route. Both groups had a lack of awareness of clinical trials and the burden of certain tests was equally felt. Females were more interested in joining a clinical trial compared to males, an interesting finding given the underrepresentation of women in dementia trials historically. In the future, there is a desire to branch out this study to different countries, such as those with lower incomes, and compare the results. This interview took place at the AD/PD™ 2023 congress in Gothenburg, Sweden.
These works are owned by Magdalen Medical Publishing (MMP) and are protected by copyright laws and treaties around the world. All rights are reserved.
Transcript (edited for clarity)
It’s actually a project that I’m very excited about presenting as it’s been in the works and in conversation for a long time. So it’s been spearheaded actually by a nonprofit organization where I spend quite a lot of my free time called the Women’s Brain Project. And the mission of the Women’s Brain Project is that it’s dedicated to raising awareness, doing research and investigating sex and gender differences in brain and mental health...
It’s actually a project that I’m very excited about presenting as it’s been in the works and in conversation for a long time. So it’s been spearheaded actually by a nonprofit organization where I spend quite a lot of my free time called the Women’s Brain Project. And the mission of the Women’s Brain Project is that it’s dedicated to raising awareness, doing research and investigating sex and gender differences in brain and mental health. And this can take on many different types of faces. So sometimes it can be something that is more into, let’s say animal research or pre-clinical, or something that goes more into let’s say on a clinical level, or something that is a little bit of a mixed bag like this. This project, even though it is research, it’s entering more into the kind of policy realm.
So what we decided to do with this project is, there is what we call a patient journey or a patient pathway depending on which terms people prefer to use. And this is kind of a journey that represents the beginning of the symptom onset of the patient when they start to realize that there’s something wrong and they go to the health care practitioner all the way to treatment and also sometimes palliative care in the very end. And so this is something that’s very much used in the industry also by policy makers kind of to identify certain milestones that would be essential to address or gaps. And it’s something that becomes kind of like the center point for a lot of strategic decisions. So one of the things that we were wondering is, this patient journey there always tends to be just kind of one patient journey that people tend to follow. And one of the big questions that we had were if it differentiated between males and females. And so this is how we came upon the idea to do a patient journey that looked at it through a sex and gender lens and two separate kind of the different experiences between males and females. And so we sought out to look for pharma partners, industry partners that would be interested in collaborating with us and trying to figure this out. And this is kind of the birth of the project.
So this is still very much the pilot phase. We’re really hoping that we can expand the project so that it’s bigger and has more of an impact. So we started with 142 patients that we surveyed with their caregivers. We did this in close partnership with Charles Rivers Associates that helped us do the surveying. We targeted two countries at the moment, so the US and Germany as our pilot countries. But hopefully one day we’d like to branch out to different countries as this could also have an impact on the results as well. And you know, an interesting look would be also to look at lower income countries. So we ran this survey with 142 for now. And in this survey we interviewed them on their different experiences in specific milestones of this patient pathway. We’ve gotten some preliminary results at the moment that do show trends towards certain key differences as well as key similarities. And what we’re kind of doing at the moment is at AD/PD will be presenting the trends and the kind of observations that we’ve seen. But we in the background are also doing an extensive statistical analysis to see if these differences are actually statistically significant as well and that’ll hopefully become a publication in the near future.
There’s a couple that seem very interesting. We have yet to see whether they will show us a statistical difference. But one, for example, was a difference in the diagnostic pathway of the patient. So it tended to be slightly shorter for males than it was for females. Another observation that was quite interesting is that males would tend to get their diagnosis or get access to the specialist a lot quicker, whereas women seem to go through the GP route. There were key similarities that were also quite interesting. For example, there was not a lot of awareness about clinical trials. I think also the burden for certain tests also felt the same. And then I think another point that we found quite interesting and that we spoke about very briefly at another conference, at CTAD last year actually, was that there were more females that were interested in joining a clinical trial rather than males, which is very interesting because actually what you see is the opposite. It’s quite difficult to recruit females that represent the actual patient population of dementia.