Endometriosis Research Program
Background.
Endometriosis is an estrogen-dependent chronic inflammatory disease of a still unclear etiology that affects roughly 10% of biological women [1]. In endometriosis, tissue similar to that lining the uterus (i.e., the endometrium) grows outside of the uterus. This tissue bleeds, which stimulates an inflammatory reaction [2], resulting in scarring, the formation of adhesions, and nodules [3, 4]. Endometriosis often manifests as irregular menstrual bleeding, painful menstrual cramps, chronic pelvic pain, and/or difficult or painful intercourse [5]; accounts for up to 50% of cases of infertility [5]; and results in considerable physical and psychosocial dysfunction [6]. Unfortunately, despite affecting roughly one out of every 10 biological females, endometriosis has an estimated 6.7 year diagnostic delay across the globe [7], contributing to prolonged physical and mental patient suffering.
Aims.
This program of research focuses on improving patient experience for patients with endometriosis. This program of research thus far has targeted three areas crucial to patient experience: diagnostic error, the patient-clinician relationship, and patient support networks including online communities. This work seeks to better understand how patient relationships with clinicians work in concert with patients' broader support networks outside of the healthcare system to shape the patient experience, particularly around issues of diagnosis.
Projects
Completed projects:
- The Relationship between the Patient-Physician Relationship and Patient Online Community Use in Women with Endometriosis (unfunded)
- Invalidation of Medical Symptoms by Healthcare Providers and Partners of Individuals with Endometriosis (unfunded)
- Physician Support Preferences of Individuals with Endometriosis (externally funded)