QC: Research reveals alarming gaps in endometriosis diagnosis among minorities

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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

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Episode Transcript

Speaker 1 (00:00):
Life moves fast and so should the answers to your
biggest questions.
Welcome to EndoBattery's QuickConnect, your direct line to
expert insights Short, powerfuland right to the point.
You send in the questions, Ibring in the experts and in just
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No long episodes, no extra timeneeded, and just remember

(00:20):
expert opinions shared here arefor general information and not
for personalized medical advice.
Always consult your providerfor your case-specific guidance.
Got a question?
Send it in and let's quicklyget you the answers.
I'm your host, alana, and it'stime to connect Today.

(00:47):
I'm thrilled to be joined by DrAllison Bontempo, a postdoctoral
research fellow in theDepartment of Pediatrics at
Rutgers Robert Wood JohnsonMedical School.
Dr Bontempo holds a PhD and anMA in health communication from
Rutgers University, along with abachelor's in science and
psychology and English writingfrom Sacred Heart University.
Her research centers onimproving the patient experience
, with the focus on three keyareas diagnostic error, the

(01:08):
patient-clinician relationshipand patient support networks,
including online communities.
She's doing incredible workexploring how relationships
between patients and clinicians,as well as broader support
networks, shape the patientjourney, especially around
issues of diagnosis.
Please help me in welcoming DrAllison Bontempo.
Do you see a disparity amongstdifferent nationalities,

(01:31):
ethnicities?

Speaker 2 (01:32):
races.
It's not something I've gottenas much into.
It's something that I plan tolook at in future work.
I am collaborating with somefolks from Baylor College of
Medicine and right now we'reinterviewing patients about
their diagnostic journeys,essentially with endometriosis
and lupus, who are specificallyracial, ethnic minorities and

(01:56):
also looking at genderminorities, so non-binary folks.
I mean it could just be youknow cisgender females as well,
but looking at their experiences, just be you know cisgender
females as well, but looking attheir experiences.
But I know that it takes longerto get diagnosed as a racial
minority patient, at least forBlack or African American
patients.
If you think about thediagnostic delay, what it is now

(02:17):
the average diagnostic delay Ilike to emphasize the average
because it's just like.
No, this isn't like the upperlimit, this is like the average,
right?
If we think about that, wethink about the fact that Blacks
and other racial minoritieshave largely been excluded,
right?
So my studies a lot of time Ihave like 85% of the sample is
non-Hispanic, white and so like.
If we're calculating adiagnostic delay of eight point

(02:41):
something years with a largelywell-educated white sample, what
are we going to get?
When we look at minoritypatients with regard to
socioeconomic status, regard torace, regard to gender identity.
You know what does that looklike and the research just
hasn't been done yet.
So, while things are hopefullyimproving for your diagnosis

(03:04):
right now and more awareness andeverything, the more we include
those patients, I feel likethat number might stay stagnant
because, while the numbers mightbe reduced from the awareness
and maybe more training and whathave you, as we're also
including more Blacks, racialminority patients, we're

(03:24):
probably also seeing.
You know what I mean.
So, like that's research thatneeds to be done and I know I
did see on Instagram there was Iforget what university, but
they paired with EndoBlack theorganization 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 comeout and be published, but I'd

(03:46):
like to see what they got in theresults.
But we are doing myself, withsome colleagues at Baylor, are
doing that with patients as well, with endometriosis.
So more needs to be done.

Speaker 1 (03:57):
That's a wrap for this Quick Connect.
I hope today's insights helpedyou move forward with more
clarity and confidence.
Do you have more questions?
Keep them coming, send them inand I'll bring you the expert
answers.
You can send them in by usingthe link in the top of the
description of this podcastepisode or by emailing contact
at endobatterycom or visitingthe endobatterycom contact page.

(04:22):
Until next time, keep feelingempowered through knowledge.