Study reveals critical gaps in care for PCOS patients

Study reveals critical gaps in care for PCOS patients: © torwaiphoto - stock.adobe.com

Polycystic ovary syndrome (PCOS), a condition affecting approximately 10% of females, is frequently underdiagnosed, undertreated, and underresearched, according to a new study presented at the 2024 ACOG Clinical and Scientific Meeting. The study reveals substantial dissatisfaction among PCOS patients regarding their health care experiences, highlighting the need for improved patient resources and provider education.¹

In the study presented at ACOG, researchers conducted virtual focus groups with patients receiving PCOS care at a university hospital's obstetrics and gynecology clinic. The sessions, lasting between 60 to 90 minutes, aimed to uncover the factors contributing to suboptimal PCOS care. Rapid qualitative analysis of the discussions identified several major themes.

Twenty-four participants, with a median age of 29 years, took part in the focus groups. Among them, 3 identified as non-White and 8 as Hispanic or Latino. The most bothersome symptoms reported were unwanted hair, menstrual irregularity, cystic acne, and pelvic pain. Notably, the time from symptom onset to diagnosis ranged dramatically from 2 months to 13 years.

One identified barrier to timely diagnosis was the dismissal of symptoms by health care providers and a failure to perform diagnostic tests. Following diagnosis, many participants reported feeling overwhelmed, fearful, and confused, citing a lack of educational resources provided by their health care providers. Participants expressed a desire for more information regarding treatment options and the implications of PCOS on fertility and long-term health.

Recommendations for initial treatment commonly consisted of weight loss and prescriptions for oral contraceptives (metformin, and spironolactone). However, referrals to nutrition and behavioral health services were rare and, in the case of behavioral health, non-existent. Treatments tended to focus on individual manifestations of PCOS rather than addressing the comprehensive well-being of patients.

The study authors concluded that the frequent dismissal of symptoms, delays in diagnosis, and uncertainty about future health outcomes are prevalent issues in the care of PCOS patients. These findings underscore the necessity for better patient resources and enhanced provider education regarding the manifestations, diagnosis, and treatment of PCOS.

Aside from gaps in care, PCOS has been shown to have a significant impact on women’s quality of life, and in 1 study, the workplace. In a study conducted by Allara Health, investigators sought to uncover the impact PCOS had on women in the workplace.2

Results from the Allara study found over 50% of women with PCOS missed work because of the condition, 72% reported an adverse impact from PCOS on the quality of their work, and 51.5% felt PCOS held them back in their professional lives.

These findings highlight the necessity for comprehensive PCOS care and greater awareness of its effects on women's mental health through integrated care models and enhanced education for providers and employers. Moreover, addressing health care disparities is crucial to mitigating the professional and economic impacts of PCOS.

“PCOS symptoms often emerge or worsen just as women are launching their professional lives, and disruptions at such crucial times could inevitably impact career trajectory,” said Heather Huddleston, MD, director of the University of California San Francisco PCOS Clinic. “We need to do better meeting the needs of this patient population so they can get back to participating fully in their lives.”

Reference:

1. Zhang A, McKenney K, Ross KV, Sehrt MN, Ley SA, Phimphasone-Brady P. Patient Experiences with Dismissal, Delay, and Uncertainty in Diagnosis of Polycystic Ovary Syndrome. Presented at: ACOG 2024 Annual Clinical and Scientific Meeting; May 17-19, 2024; San Francisco, California.

2. Allara Health announces new study that reveals significant productivity loss due to polycystic ovary syndrome (PCOS), highlights racial and mental health factors. BioSpace. April 3, 2024. Accessed May 15, 2025. https://www.biospace.com/article/releases/allara-health-announces-new-study-that-reveals-significant-productivity-loss-due-to-polycystic-ovary-syndrome-pcos-highlights-racial-and-mental-health-factors/?s=86