Danielle Kogan Illustrations
Delayed Diagnosis in Women:
Understanding Gender Biases
Meet Charlotte
Stage 4 Endometriosis, 19 yrs To Diagnosis
Charlotte started having symptoms when she was just 8 years old and by the time she was 11, she was diagnosed with ovarian cysts. Further symptoms and cysts got worse over time and when Charlotte saw her doctor she was told that 'she was just someone that had cysts.' One of her long time medical teams mismanaged things for many years. They potentially thought it was endometriosis or something hormonal but didn't offer any options for pain management except for a variety of birth control options.
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She eventually had surgeries in 2014, 2016, 2019, 2020, and 2022. She was finally diagnosed with Stage 4 endometriosis after she traveled to have a Specialist in Portland, Maine to preform surgery for her in 2020. She then in 2022 went to Atlanta, GA for surgery with another specialist who had more experience in thoracic endometriosis. The average length of diagnosis for endometriosis is 7-10 years, and Charlotte's diagnosis took 19 years in total.
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When she finally received a diagnosis she stated, "I was relieved because I wasn't crazy and all of the pieces started to come together. Before that there wasn't enough evidence for it to come together. It was also depressing as it took so long. There was a lot of medical trauma and PTSD that came from it."
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What Is Delayed Diagnosis?
"A diagnosis that was unintentionally delayed while sufficient information was available earlier."
-(Tudor at el., 2016)
Delayed Diagnosis Timeline
This is a hypothetical representation of the delayed diagnosis timeline
Each person has a different diagnosis experience.
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Symptoms occur
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'I'm having this x symptoms for this long'
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Throughly describes what is wrong
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'What can I do? What do you think this is?'
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'You are too young'
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'Have you tried yoga, therapy, changing your diet?'
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'What you are experiencing is normal'
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'Maybe it is just your period'
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'You look fine to me'
Sees Clinician
Tells Them
Getting Told
I have been asked, "Have you tried yoga" 4 times now!
Works On Symptom Management
Maybe it is all in my head?
Ugh it isn't getting better...
Sees Clinician Again
Tells Them
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'I have tried what you said and it isn't getting better'
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'I think there is something wrong with me'
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'This is nothing to be worried about'
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'Maybe you have anxiety or depression'
Getting Told
Basic Blood Tests Done
Gets Ghosted due to 'normal test results'.
No further testing is done.
After 6 Months Sees New Clinician
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'This is my experience and symptoms so far'
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'I think there is something wrong with me'
Tells Them
FINALLY
Getting Told
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'I believe you and I will make sure that we figure this out'
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Let me refer you to a specialist!
This takes 10 months!​
Getting More Extensive Blood Tests + Other Scans Ordered
Goes Over Results
+
FINALLY Gets A Diagnosis!
Total Time To Diagnosis = 3 years!
It Takes Longer For Women To Get Diagnosed Than Men
Let's Talk About It!
Gender Bias In Medicine
Gender Bias is the preference for one gender over the other, and can come up as prejudices and stereotypes. Gender bias can also be unconscious, which is known as implicit bias. The researchers also note a general trend that doctors do not believe in women’s pain, or that females are “used to internal pain” because of menstruation and childbirth.
Women Are Often Given:​
Less amounts and effective pain medication​
More antidepressant prescriptions​
More referrals to mental health services
Women Weren't Included in Clinical Trial Research Until 1993...
How does this affect medical training, appointments, diagnosis,
treatment, and medical innovation?
How Does This Affect Women?
When It Comes to Diagnosis...
There Is Delayed Diagnosis Due To Gender
The MarketScan Commercial Claims and Encounters (CCAE) data is derived from inpatient and outpatient medical claims as well as procedural and outpatient pharmaceutical claims. In total, the full dataset includes records from 80,947,643 women and 77,441,202 men. It is important to note that Stroke and Heart Attacks have a shorter diagnosis timeline as they are more easily diagnosed due to outward symptoms.
Delayed Diagnosis Mainly Effects People With Autoimmune Diseases
20% of people worldwide have autoimmune diseases
Of all patients diagnosed with autoimmune diseases, 80% are WOMEN
Source: (Angum et al., 2020)
Fibromyalgia
FM has a female preponderance of 3:1.
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"The average time for a patient to get diagnosed with FM is 2.3 years after first presenting to the health setup, and the number of physicians visited in the meantime is 3.7."
This delay is most likely due to the unspecific clinical features and the lack of clinicians’ comprehension of FM," (Qureshi at el., 2021).
Source: Google
Meet Julie
Fibromyalgia, Around 6 yrs To Diagnosis
Julie started to have symptoms of Fibromyalgia around the age of 12. Their mom, who has Lupus and Fibromyalgia noticed their symptoms and took Julie to their Primary Care. The male PCP thought they were attention seeking, but didn't want to diagnosis or test them. After fighting with the PCP Julie saw a female PA and got a referral for a pediatric rheumatologist. Unfortunately, the pediatric rheumatologist didn't want to hang a diagnosis on Julie because they were young, so no diagnostic testing was done. The pediatric rheumatologist also put them on hydroxychloroquine.
The medicine managed the pain Julie was experiencing, but Julie didn't get diagnosis of fibromyalgia until around 18 years old after they saw a new female rheumatologist. Julie recounts the doctor after hearing their symptoms was confused why they weren't diagnosed earlier. They poked Julie in the Fibromyalgia pressure points, and then quickly stating, "You have Fibromyalgia. Did anyone tell you?" Julie was shocked that the rheumatologist figured it out just by talking to her.
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"Getting a diagnosis was was both surreal and freeing after all of that time (after original primary care said she was fine without a diagnosis). I looked back at all of my symptoms and can say that I wasn't crazy. All the doctors that actually diagnosed me were female. I will not see male doctors anymore. Hopefully things will change, but not without us making it happen. There's hope, I think."
Not All Stories Are Like This Though
A Story of Hope
"My Lupus diagnosis was very shocking, because there is part of you that suspects that something is causing all these things that are slightly abnormal. My symptoms were worse versions of what normal people experience (fevers, mouth ulcers, etc). I thought what I was experiencing was just all in my head. When it ends up actually being something, everything aligns."
"I was lucky as most women get diagnosed in the their 30s and 40s. I have a incredible doctor that was vigilant... my diagnosis process could have gone a lot differently. This shows the power of a physician that does their job properly."
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-Anonymous, 15 years of symptoms, Took 1 month to diagnosis after going to clinician
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Lupus
90% of people diagnosed with Lupus are WOMEN and on average it takes nearly 6 years from first symptom to diagnosis.
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"63% of people with lupus surveyed report being incorrectly diagnosed. Of those reporting incorrect diagnosis, 55% report seeing four or more different healthcare providers for their lupus symptoms before being accurately diagnosed,"
(Lupus Foundation of America, 2021).
Not Only Does Gender Bias Affect Diagnosis, But It Is Also KILLING WOMEN
Morbidity Is Linked To Gender Bias
HOW TO READ THIS CHART:
Gender Concordance is when a patient and physician have the same gender. This chart models the effect of gender concordance on healthcare outcomes particularly patient survival. It was found that female patients with a male physician have a decreased survival rate (-0.01%) compared to female patients that had a female physician (0.03%).
Coefficient estimates and OLS are used to evaluate the correlation of multiple variables.
Doctors are more likely to regard the symptoms that affect females as “atypical” compared with the symptoms that often affect males. Females are less likely to experience “classic” heart attack symptoms, and are less likely to receive treatment. The American Heart Association (AHA)Trusted Source says this is because doctors use a diagnostic criteria that is geared towards males. The data found that females presenting with a heart attack were more likely to die when a male doctor treated them, compared with a female doctor. This effect lessened the more male doctors interacted with female patients and colleagues.
Systematic Solutions To This Problem
Creating a more rigorous system of communicating abnormal results of investigations to patients​
Direct hotlines to specialists and primary care to discuss patient problems
Better training of primary care clinicians in relevant areas including implicit biases
Improved and open communictaion between clinicians as well with pateints
Other systematic changes need to occur to address ENTIRE HEALTH CARE EQUITY,
not just Gender Equity in health care!
Resources For Patient Advocacy
Disease Specific Resources:
You can be your own best advocate!
Apps:
Goblin Tools: To Do Lists
Health Care Visualizations
How To Feel: Emotion Tracking
Bearable: Chronic Illness Daily Tracking
Migraine Tracking App
Theories and General Healthcare Resources:
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American Medical Association
Pain Access Network
Spoon Theory
Citations
Sun, T. Y., Hardin, J., Nieva, H. R., Natarajan, K., Cheng, R. F., Ryan, P., & Elhadad, N. (2023). Large-scale characterization of gender differences in diagnosis prevalence and time to diagnosis. medRxiv : the preprint server for health sciences, 2023.10.12.23296976. https://doi.org/10.1101/2023.10.12.23296976
Tudor Car, L., Papachristou, N., Bull, A., Majeed, A., Gallagher, J., El-Khatib, M., Aylin, P., Rudan, I., Atun, R., Car, J., & Vincent, C. (2016). Clinician-identified problems and solutions for delayed diagnosis in primary care: a PRIORITIZE study. BMC family practice, 17(1), 131. https://doi.org/10.1186/s12875-016-0530-z
Whitacre CC. Sex differences in autoimmune disease. Nat Immunol. 2001;2(9):777-780. https://doi.org/10.1038/ni0901-777
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Qureshi, A. G., Jha, S. K., Iskander, J., Avanthika, C., Jhaveri, S., Patel, V. H., Rasagna Potini, B., & Talha Azam, A. (2021). Diagnostic Challenges and Management of Fibromyalgia. Cureus, 13(10), e18692. https://doi.org/10.7759/cureus.18692
Lupus facts and statistics. Lupus Foundation of America. (2021). https://www.lupus.org/resources/lupus-facts-and-statistics#:~:text=Lupus%20is%20known%20as%20%22the,first%20notice%20their%20lupus%20symptoms.
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Biggers, A. (2021). Gender bias in medical diagnosis: Facts, causes, and impact. Medical News Today. https://www.medicalnewstoday.com/articles/gender-bias-in-medical-diagnosis#how-does-it-affect-diagnosis
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Angum, F., Khan, T., Kaler, J., Siddiqui, L., & Hussain, A. (2020). The Prevalence of Autoimmune Disorders in Women: A Narrative Review. Cureus, 12(5), e8094. https://doi.org/10.7759/cureus.8094
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Greenwood BN, Carnahan S, Huang L. Patient-physician gender concordance and increased mortality among female heart attack patients. Proc Natl Acad Sci U S A. 2018;115(34):8569-8574. https://doi.org/10.1073/pnas.1800097115
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Matthew, D. B. (2018). Just medicine: A cure for racial inequality in American Health Care. New York University Press.
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Merone, L., Tsey, K., Russell, D., Daltry, A., & Nagle, C. (2022). Self-Reported Time to Diagnosis and Proportions of Rediagnosis in Female Patients with Chronic Conditions in Australia: A Cross-sectional Survey. Women's health reports (New Rochelle, N.Y.), 3(1), 749–758. https://doi.org/10.1089/whr.2022.0040
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Sloan, M., Harwood, R., Sutton, S., D’Cruz, D., Howard, P., Wincup, C., Brimicombe, J., & Gordon, C. (2020). Medically explained symptoms: A mixed methods study of diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmune diseases. OUP Academic. https://academic.oup.com/rheumap/article/4/1/rkaa006/5758274#supplementary-data
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Mayo Foundation for Medical Education and Research. (2024). Medical Diseases & Conditions. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions
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Balch, B. (2024). Why we know so little about women’s health. AAMC. https://www.aamc.org/news/why-we-know-so-little-about-women-s-health#:~:text=Before%201993%2C%20women%20were%20rarely,and%20devices%20work%20for%20women.