QC: Research reveals alarming gaps in endometriosis diagnosis among minorities

Dr. Allyson Bontempo discusses the significant research gaps in understanding endometriosis diagnostic delays across different racial, ethnic, and gender groups. With the average diagnostic delay at over eight years based on predominantly white research samples, the delay for minority patients likely remains unknown and potentially much longer.

• Most endometriosis research samples consist of about 85% non-Hispanic white participants
• Existing research shows Black patients typically experience longer diagnostic delays for various conditions
• Dr. Bontempo is collaborating with Baylor College of Medicine to study diagnostic journeys of racial, ethnic, and gender minorities
• Current increased awareness may reduce delays for some patients while including previously excluded minorities in research
• Research partnership between EndoBlack and a university is currently gathering data on Black patients' experiences

Send your questions by using the link in the description of this episode, emailing contact@endobattery.com, or visiting the endobattery.com contact page.

Chapters

• 0:00 Introduction to Quick Connect Format
• 0:47 Introducing Dr. Allison Bontempo
• 1:27 Racial Disparities in Diagnostic Delays
• 3:35 Episode Conclusion and Contact Information

Transcript

Speaker 1: 0:00

Life moves fast and so should the answers to your biggest questions. Welcome to EndoBattery's Quick Connect, your direct line to expert insights Short, powerful and right to the point. You send in the questions, I bring in the experts and in just five minutes you get the knowledge you need. No long episodes, no extra time needed, and just remember expert opinions shared here are for general information and not for personalized medical advice. Always consult your provider for your case-specific guidance. Got a question? Send it in and let's quickly get you the answers. I'm your host, alana, and it's time to connect Today.

Speaker 1: 0:47

I'm thrilled to be joined by Dr Allison Bontempo, a postdoctoral research fellow in the Department of Pediatrics at Rutgers Robert Wood Johnson Medical School. Dr Bontempo holds a PhD and an MA in health communication from Rutgers University, along with a bachelor's in science and psychology and English writing from Sacred Heart University. Her research centers on improving the patient experience, with the focus on three key areas diagnostic error, the patient-clinician relationship and patient support networks, including online communities. She's doing incredible work exploring how relationships between patients and clinicians, as well as broader support networks, shape the patient journey, especially around issues of diagnosis. Please help me in welcoming Dr Allison Bontempo. Do you see a disparity amongst different nationalities, ethnicities?

Speaker 2: 1:32

races. It's not something I've gotten as much into. It's something that I plan to look at in future work. I am collaborating with some folks from Baylor College of Medicine and right now we're interviewing patients about their diagnostic journeys, essentially with endometriosis and lupus, who are specifically racial, ethnic minorities and also looking at gender minorities, so non-binary folks. I mean it could just be you know cisgender females as well, but looking at their experiences, just be you know cisgender females as well, but looking at their experiences.

Speaker 2: 2:08

But I know that it takes longer to get diagnosed as a racial minority patient, at least for Black or African American patients. If you think about the diagnostic delay, what it is now the average diagnostic delay I like to emphasize the average because it's just like. No, this isn't like the upper limit, this is like the average, right? If we think about that, we think about the fact that Blacks and other racial minorities have largely been excluded, right? So my studies a lot of time I have like 85% of the sample is non-Hispanic, white and so like. If we're calculating a diagnostic delay of eight point something years with a largely well-educated white sample, what are we going to get? When we look at minority patients with regard to socioeconomic status, regard to race, regard to gender identity. You know what does that look like and the research just hasn't been done yet.

Speaker 2: 3:00

So, while things are hopefully improving for your diagnosis right now and more awareness and everything, the more we include those patients, I feel like that number might stay stagnant because, while the numbers might be reduced from the awareness and maybe more training and what have you, as we're also including more Blacks, racial minority patients, we're probably also seeing. You know what I mean. So, like that's research that needs to be done and I know I did see on Instagram there was I forget what university, but they paired with EndoBlack the organization and I know that they were recruiting for a study. So I'm interested in you know, obviously it's going to take a long time for something to come out and be published, but I'd like to see what they got in the results. But we are doing myself, with some colleagues at Baylor, are doing that with patients as well, with endometriosis. So more needs to be done.

Speaker 1: 3:57

That's a wrap for this Quick Connect. I hope today's insights helped you move forward with more clarity and confidence. Do you have more questions? Keep them coming, send them in and I'll bring you the expert answers. You can send them in by using the link in the top of the description of this podcast episode or by emailing contact at endobatterycom or visiting the endobatterycom contact page. Until next time, keep feeling empowered through knowledge.