Women With Inflammatory Bowel Disease Wait Longer for Diagnosis and Treatment, Despite Presenting Earlier With Red-Flag Symptoms
Across many disease states, women’s symptoms are often not taken as seriously as men’s. Female pain, for example, is more likely to be attributed to a patient’s psychology, playing into longstanding historical biases of pain as one of the innumerable symptoms of hysteria — a sexist catch all term stemming from the Greek word for “uterus” and tied to the once-held belief that many female symptoms were caused by the uterus’s spontaneous movement throughout the body.
Inflammatory bowel disease (IBD) is likely one disease where this bias shows up. Rates of IBD have skyrocketed over the past three decades. Largely a disease of the industrialized West, the incidence of IBD in the U.S. has more than doubled since the early 90s, with nearly half of global cases being diagnosed in the U.S. Today, IBD affects roughly 1.3% of U.S. adults (~3 million Americans).
IBD is an umbrella term for two poorly understood conditions with similar but distinct presentations: Crohn's disease and ulcerative colitis. Overall, the literature suggests that IBD is more common in women, possibly reflecting a female predominance in adult-onset Crohn’s disease specifically, as has been reported. The reasons for this predominance are unclear; hormonal factors may play a role, as well as factors related to the higher rates of autoimmune diseases in the female population. Despite having a higher IBD rate, women face greater delays in care and suffer more with this disease than their male counterparts: Studies have identified gender-based differences in the disease progression, complications, and psychiatric co-disorders of IBD. These delays are impactful and have been associated with increased disease-related complications and higher risks in surgical treatment.
We sought to better understand and characterize existing gender-based gaps in care for IBD patients. Using Komodo’s Healthcare Map and software, we identified patients diagnosed with IBD between 2018 and 2021, and looked at whether or not they had been seen for symptoms of abdominal pain and GI bleeding prior to their diagnosis. We looked at who of those patients had emergency department (ED) or inpatient visits prior to diagnosis, and who underwent surgery or were prescribed a pharmacological treatment regimen within 30 days of diagnosis.
This is what we found:
Compared with men, women waited longer to receive an IBD diagnosis, presenting with red-flag symptoms up to a year in advance of their diagnosis.
Between three months and a year prior to receiving an IBD diagnosis, more women than men presented with red-flag symptoms without receiving a diagnosis. Of patients who presented with red-flag symptoms between three months and a year before an IBD diagnosis, 63% were women and 37% were men. Of patients who presented with red-flag symptoms in the three months prior to their diagnosis, 60% were women and 40% were men, which is closer to the expected incidence for both genders.
OB/GYNs played a larger role than expected in the diagnoses of female patients with IBD. In looking at patients with complications at the time of their diagnosis, several women had an OB/GYN provider listed in their initial IBD diagnosis claim, suggesting a pelvic pain workup preceded their diagnosis and may have contributed to a delay. Gastrointestinal symptoms and symptoms of pelvic disorders like endometriosis can overlap, which may complicate the diagnostic process in women.
Women had more ER encounters and more inpatient admissions in the two weeks prior to their diagnosis, suggesting more severe disease and a higher need for acute care.
Women made up 60% of inpatient admissions and 58% of ED visits in the two weeks prior to their diagnosis. When diagnosed early, IBD can be managed well enough to avoid frequent inpatient admissions and ED visits. The higher prevalence of IBD-related inpatient admissions and ED visits amongst female patients may point to more severe disease at diagnosis, more diagnostic delays, and more poorly managed disease.
Women experienced greater treatment delays after diagnosis than men.
Women represented 57% of all new IBD diagnoses but made up just 52% of patients who underwent surgery and 54% of patients initiating pharmaceutical therapy within 30 days of diagnosis. The gap in diagnosis vs. treatment rates suggests a more severe disease trajectory and gender-based gaps in post-diagnostic care.
Causes of gender-based discrepancies in healthcare are multifaceted; several factors may be contributing to this trend. For one, symptoms of IBD, like abdominal pain and diarrhea, are often vague, variable, and can be commonly confused with other conditions. Secondly, abdominal and pelvic symptoms often lead women to receive a gynecologic workup, which can contribute to IBD diagnosis delays. A lack of provider knowledge of gender-specific symptomatology may also contribute; research suggests that women with IBD are more likely to experience symptoms like intense fatigue and changes in body image and sexual activity. Lastly, providers’ responses to pain symptoms may also play a role: Research has shown that female expressions of pain are underestimated and undertreated compared with male pain.
These findings highlight the power of Komodo Health’s software applications to quickly unlock insights from connected, complete patient journey data. Our Prism application allowed us to collect timely and comprehensive coverage of patients and create representative patient-level cohorts for further analysis. We were able to observe detailed trends in inpatient experiences at scale and identify opportunities for targeted action.
Our findings suggest that patient journey patterns for female patients may be leading to higher health burdens from later diagnosis, increased complications, and more poorly managed disease. There is much opportunity for impact, through provider education on gender-specific presentations, and by engaging OB/GYNs who see referred patients with IBD symptoms. We hope these findings can be used to support and inform the development of gender-specific approaches to treating patients with IBD.
The insights needed to close gaps in care can be found in real-world patient data. Whether that is used to inform provider engagement strategies or to build a deeper understanding of the patient journey, Komodo is providing healthcare and Life Sciences organizations the software and technology to unlock those insights and improve patient outcomes.