Multidisciplinary approaches addressing all patient needs and greater disease awareness are needed to improve care, diagnosis and development of treatments for people with endometriosis according to a review study.
The research, “Assessing Research Gaps and Unmet Needs in Endometriosis,” was published in the American Journal of Obstetrics and Gynecology.
Endometriosis may affect all aspects of a woman’s life, including sexual relations, social activities, emotional well-being, and work productivity. The disease is costly, as claims data show that annual health care costs are more than triple those of women without endometriosis, which can be aggravated with greater severity of disease, and presence of pelvic pain and infertility.
However, endometriosis is still underfunded and under-researched, the researchers noted, which limits scientific progress and the number of available diagnostic and treatment options.
Aiming to address these concerns, the Society for Women’s Health Research (SWHR) brought together a group of researchers, clinicians, and patients as well as industry and government officials, who evaluated barriers affecting endometriosis diagnosis and treatment, reviewed current practice, and highlighted research priorities.
According to the expert group, the current lack of knowledge and awareness about the causes of endometriosis contributes to the significant delays — seven to 12 years — from first experiencing symptoms to diagnosis. These delays are even worse for women with pelvic pain and for younger women, and may cause physical and emotional damage, as well as increase costs associated with the disease.
Another contributing factor is that the current gold standard for diagnosis requires surgery (laparoscopy), warranting the development of accurate, noninvasive and less costly diagnostic tools, such as biomarkers. Also, current guidelines only recommend assessing endometrial lesions, despite reports of a questionable association between the number of lesions and disease severity, symptoms and impact on women’s quality of life.
Campaigns to educate patients, healthcare providers, and the public may also help achieve more timely and accurate diagnosis and treatment, the team noted. Additional barriers are difficulties with insurance coverage, and the stigma around menstrual issues and society’s normalization of women’s pain, which may make patients reluctant to discuss symptoms or seek care.
“In addition, women who do bring up their symptoms may fall victim to the well-documented clinical gender bias that has resulted in some women’s pain being dismissed or inadequately treated,” Rebecca Nebel, PhD, the study’s senior author and director of scientific programs at SWHR, said in a press release.
Standardized screenings, such as those used in cases of potential violence against women, could be used as a model in endometriosis, the experts said.
Other barriers are related to healthcare providers, as women need to make an average of seven visits to their primary provider before being referred to specialists, and often are misdiagnosed. According to the study, nearly half of U.S. counties lack an obstetrician-gynecologist, which affects women living in rural areas most.
As for current practice in treatment, most medical and surgical approaches — including hysterectomy and uterus removal — focus on managing pain and associated symptoms by suppressing or removing endometrial lesions, but may not be effective.
Acupuncture, physical therapy and yoga are examples of nonpharmacological strategies that may help ease pain. Mental health professionals may help treat depression and grieving associated with endometriosis, while also providing coping and relaxation strategies.
Available medical therapies may induce side effects such as bone loss, hot flashes, and weight gain. Also, many cannot be used when women are trying to get pregnant, often forcing them to decide on whether to minimize pain or time their attempts to conceive while off medication.
Overall, “future treatments and care should shift toward a patient-centric, multidisciplinary approach that focuses on the patient as a whole, rather than one symptom at a time,” the experts said.
Centers of expertise taking an interdisciplinary approach with experts in “laparoscopy, medical management, pain education, physical therapy, and psychological care” may help implement treatment strategies “that address all the needs of the patient, including quality-of-life issues,” the team stated.
Care should be based on the best available data. More research through increased funding is needed, not only to better understand the disease but also to find alternatives to hormonal therapy. Clinical trials should use patient-reported outcomes and have current first-line medications as comparators when possible, the researchers noted.