A US-based survey of women with polycystic ovary syndrome (PCOS), a common condition characterized by reproductive and metabolic problems, points to distrust and lack of social support from healthcare providers as major contributing factors in their negative medical care experiences, according to a new study published in the Endocrine Society’s Journal of the Endocrine Society.

An estimated 5 million to 6 million women in the United States suffer from PCOS, but many have yet to be diagnosed. PCOS affects 7% to 10% of women of reproductive age, making it the most common cause of infertility. The disorder can cause distressing symptoms like irregular periods, weight gain, many small ovarian cysts, and excess hair, and it’s been linked to other health conditions like mental health disorders, type 2 diabetes, obesity and heart disease.

“This research provides new and important evidence pertaining to deficiencies in trust and social support from healthcare providers that may contribute to negative medical experiences for patients with PCOS,” said Marla E. Lujan, PhD, of Cornell University in Ithaca, NY. “Our study suggests that physicians can improve the patient-provider relationship by tailoring their advice to acknowledge the broad impact that PCOS has on women's lives, and to listen to patient concerns without judgement. These efforts can potentially bring about continuity of care for women with PCOS.”

This cross-sectional study included 332 US-based women—134 with and 198 without PCOS. The study found that women with PCOS believe primary care physicians are well qualified to treat general health concerns but trust their opinions less when addressing issues related to PCOS. This may be because of the limited information these women receive from healthcare professionals about the disorder and the significant lag time between PCOS symptom onset and diagnosis.

A survey, published in The Journal of Clinical Endocrinology & Metabolism, in December 2016 found many women with PCOS consulted three or more health care providers and waited at least 2 years for a diagnosis.

In the new survey, women who had PCOS also reported arguments with their physicians and an overall lack of emotional support and empathy. It’s especially important to provide the right information about emotional counseling to these patients as they often suffer from anxiety and depression, which are associated with PCOS.

“PCOS is a complex medical condition that requires lifelong care,” said co-investigator, Annie W. Lin, PhD, RD, of Cornell University. “Improving the patient-provider relationship is an important first step to ensuring a successful long-term partnership focused on providing patients with timely and appropriate care.”

Other authors of the study include: Elena J. Bergomi, Jamie S. Dollahite, and Jeffery Sobal of Cornell University; and Kathleen M. Hoeger of University of Rochester Medical Center in Rochester, NY.

The study received support from the Cornell University Human Ecology Alumni Association and College of Agriculture and Life Sciences Alumni Association.