By Monica Lefton, SWHR Communications Director
Polycystic ovary syndrome (PCOS), a common hormone disorder diagnosed during a woman’s reproductive years, is a result of an excess of androgen that impacts the development and release of egg cells from the ovaries. Affecting an estimated 13% of reproductive-aged women worldwide, PCOS is commonly associated with symptoms that include irregular or prolonged periods, weight gain, acne, and excess hair growth. More startling is that 70% of women with PCOS remain undiagnosed. These gaps in awareness and diagnosis were central points of discussion during a roundtable convening, Exploring PCOS: Advancing Solutions through Interdisciplinary Research, Clinical, and Patient Perspectives, hosted by the Society for Women’s Health Research (SWHR) this June. During this closed meeting, an interdisciplinary group of researchers, health care providers, and patient advocates discussed the impact of PCOS on women’s health.
Pathophysiology of an Under-researched Disease
The complexity of identifying and diagnosing PCOS was a major theme reiterated during the roundtable. While there are known symptoms of PCOS, the cause of the disease is unknown, and to diagnosis PCOS, a provider must exclude all other possible disorders first. “It’s a diagnosis of exclusion,” said Licy Yanes Cardozo, MD, Professor of Pharmacology & Toxicology and Medicine/Endocrinology at the University of Mississippi Medical Center.
Receiving a PCOS diagnosis can be timely and costly. Nearly 50% of patients wait one to two years for a diagnosis. An initial provider’s visit can take over an hour and may include a full evaluation of androgen levels, a hormone panel, metabolic health, and pelvic ultrasound. Providers may not always think to order a hormone panel or perform a metabolic assessment, such as a glucose tolerance test, so patients who think they may have PCOS should feel empowered to ask questions and request these tests. Providers should also inquire about patients’ personal and family histories, make note of menstrual and hyperandrogenic abnormalities, and discuss the other health challenges that could be related to PCOS, like weight gain and hair growth.
There are two major criteria used for diagnosing PCOS. The NIH Criteria, set in 1990, is defined by the presence of clinical and/or biochemical signs of hyperandrogenism and oligo- or chronic anovulation. The Rotterdam Criteria was set in 2003 and defined by the presence of two of three of the following: oligo‐anovulation, hyperandrogenism, or polycystic ovaries. While both criteria are valuable for diagnosing PCOS, working group members agreed that the education around these guidelines is unclear and further research is necessary. For example, one study from 2017 indicated that over a quarter of attending physicians did not know which diagnostic criteria to use when reviewing possible PCOS cases.
PCOS is a chronic condition with no cure, impacting health systems across the body. More than half of women with PCOS will develop type 2 diabetes by the age of 40, and women with PCOS experience 19% higher risk of developing cardiovascular disease than women without PCOS. An estimated 90% of women who experience female infertility due to anovulation (the disruption of egg development and release) also have PCOS. Women with PCOS may also begin their menopause transition later; the understanding and care of women with PCOS in menopause was acknowledged by several working group members as a “huge gap” in current care practices.
Centering Metabolic Health over Weight Loss
Discussions of weight and metabolic health were intertwined throughout the roundtable, with a call from working group members to better understand the impacts of weight change during the PCOS journey. Studies show difficulties losing weight are often cited as one of the chief complaints of women with PCOS seeking care. Ali Chappell, PhD, MS, RD, CEO and Founder of Lilli Health, noted a lack of information about PCOS and insulin resistance in formal dietetic education. She added that neither PCOS nor insulin resistance appeared on the Commission on Dietetic Registration (CDR) exam she took in 2012, despite the critical role of diet and nutrition in PCOS care.
Several working groups members also stressed the importance of metabolic health education for PCOS patients, including discussing explicitly how a patient’s weight may change with PCOS and encouraging them not to internalize weight management struggles as a personal failing. Yolanda Smith, MD, MS, Professor of Obstetrics and Gynecology at University of Michigan, uses the term “metabolic health” instead of weight with her adolescent patients to help underscore that health is not just about a number. Phoutdavone “Noy” Phimphasone-Brady, PhD, Assistant Professor of Psychiatry at the University of Colorado Anschutz Medical Campus, echoed this, noting that those providing PCOS care should be hyperaware of stigmatizing and biased language that may be woven into existing clinical care practices, particularly reflecting weight bias.
Outreach that Affirms PCOS Patients
Patient-centered care must start with explaining that while individuals will live with a PCOS diagnosis for the rest of their lives, a diagnosis does not define them and “this is not their fault,” said Jessica Chan, MD, MSCE, Associate Professor of Obstetrics and Gynecology at Cedars-Sinai Medical Center. Drawing from her own experience as a PCOS patient, Dr. Chappell also echoed: “PCOS starts in the womb; it is not something you cause. We do not even know how long these genes can be passed down, but what we do know is that you can start helping your body heal and reverse symptoms today.”
PCOS affects all aspects of a person’s life. Approximately 50% of patients report missing work because of their PCOS, and 72% of patients report that their PCOS impacted their work quality. PCOS can also have a significant impact on mental health. In addition to physical symptoms, the emotional burden of living with a chronic condition like PCOS, compounded by social expectations and environmental exposures, can significantly increase the risk of depression and anxiety in affected individuals. The odds of depressive disorders are 5.7 times higher for women given a PCOS diagnosis as compared to those without a PCOS diagnosis. In addition, one study showed that women above the age of 16 with PCOS were at nearly an eight times greater risk for suicide as compared to those without PCOS. A patient-centered approach to PCOS care must firmly center mental health, and providers must lead this work by having more conversations about strategies to address mental health challenges. “While [some] providers are aware of the mental health associations with PCOS, they often don’t communicate that with their patients,” said Dr. Phimphasone-Brady.
Patient-centered PCOS care will help individuals move from participants to strategic actors in their health care journey. “We have to engage and truly mobilize patients in all of this work,” said William Patterson, Director of Public Affairs at PCOS Challenge: The National Polycystic Ovary Syndrome Association, from selecting a treatment path to advocating for research funding and contributing to disease guidance at the national level.
Securing Gaps in PCOS Treatments and Care
When asked which medical specialty might “own” PCOS care, working group members wholeheartedly agreed that PCOS care is synonymous with multidisciplinary care. Better coordinated, interdisciplinary management of PCOS improves the continuity of care across a patient’s lifetime. Providers must be aware of the overlapping health conditions that appear alongside PCOS and be comfortable discussing coordinated treatments and referring patients to other necessary specialties. Endocrinologists, allied health professionals, registered dietitians, dermatologists, reproductive medicine providers, nurse practitioners, health policy stakeholders, insurance providers, and wearable technology companies were all mentioned as individuals who could get more involved and have a powerful impact in advancing PCOS outcomes.
There are gaps in available, innovative treatments for PCOS. Many working group members expressed frustration with the fact that there are currently no Food and Drug Administration (FDA)-approved drugs to specifically treat PCOS. Diagnostic criteria are used to inform the regulatory process for drug approvals. However, because the current criteria for PCOS does not encompass the full spectrum of symptoms and associated features, like insulin resistance, providers must resort to the off-label use of drugs for PCOS management. Research gaps concerning the syndrome’s pathophysiology and genetics further limit what medications can be approved for use in PCOS cases, impacting access to care in the long run. Anti-androgens, combined hormonal contraceptives, and progestin monotherapy are some options that patients utilize to manage symptoms. Glucagon-like peptide-1 (GLP-1) receptor agonists have also been used to manage weight loss and insulin sensitivity in women with PCOS, but additional research concerning weight regain, administration during pregnancy, and long-term use are greatly needed.
The costs associated with PCOS care were also stressed during this roundtable. PCOS care has markedly high out-of-pocket expenses, and there is often limited support for uninsured, under-insured, and lower income individuals, as well as patients living in rural areas seeking care. While some organizations offer discounted medications and health care facilities might offer affordable care programs for patients, these solutions are not scalable in the current health care environment. Frequently, what insurance will cover depends on the evidence base for a condition, “and to get the evidence, we need more research and more research funding,” says Dr. Yanes Cardozo. PCOS is among many under-researched women’s health conditions where underfunding leads to insufficient disease knowledge, diagnostic delays, and gaps in care coverage.
The current economic burden estimated for PCOS has recently risen to $15 billion. It will take the full commitment of the health care ecosystem – tech and insurance companies, providers across disciplines and specialties, patients turned advocates, and health care policy decision-makers, to turn the tide on PCOS care. While working group members agreed the challenges in PCOS diagnosis and care are many, the opportunity and the potential for success is larger than the challenge. SWHR remains dedicated to closing gaps in care for PCOS patients and all women facing chronic, gynecologic health conditions. Learn more about SWHR’s work in PCOS online here.