Women diagnosed with polycystic ovarian syndrome (PCOS) reported a lack of social support and feelings of distrust toward their primary care providers, according to a cross-sectional study.
PCOS was linked with distrust of a primary care physician's opinion versus a comparison group without PCOS, reported Marla Lujan, PhD, of Cornell University in Ithaca, New York, and colleagues.
Women with PCOS also reported more arguments with their physicians about their health concerns than those in the comparison cohort, the authors wrote in the .
"This study showed that women with PCOS only sometimes received information about PCOS, per se, and beneficial dietary and physical activity behaviors, which is consistent with previous findings that patients with PCOS are provided with limited information from their healthcare providers," the authors wrote. "Further, we also noted that women with PCOS were only sometimes satisfied with the emotional support provided by their healthcare providers, which was closely linked to poor beliefs about receiving encouragement about their health."
PCOS may put women at risk for mental health conditions including depression, anxiety, and bipolar disorder, and it is therefore especially important for physicians to provide support and direction toward emotional counseling, according to the authors. This report aligns with a 2016 study published in the in which women reported frequently consulting with at least three healthcare providers and waiting at least 2 years for a diagnosis.
Educating, acknowledging, and understanding patients are some of the most fundamental aspects of early PCOS treatment, according to Diana Bitner, MD, Medical Director of Midlife Menopause and Sexual Health at Spectrum Health in Grand Rapids, Michigan.
"A woman with PCOS doesn't necessarily have overt signs, so the provider might say she doesn't have PCOS. She is at the point that she's frustrated, she knows something is wrong, and feels like her body isn't making sense," Bitner told . "The number one thing [for physicians] is to acknowledge her concerns, to acknowledge it's hard for her to have hair growth and not be able to lose weight and have irregular cycles. Even just to acknowledge that she's not crazy is very powerful."
Of the 332 women who answered the online questionnaire (the Instrument for Polycystic Ovary Syndrome: Medical Experiences) 134 had PCOS and 198 did not. The women were an average age of about 28 and were 79% white, with over half having graduated from college and 62% residing in New York State. Women were excluded if they reported implausible or missing BMIs, isolated oligomenorrhea, or another preexisting chronic disease.
Women answered a series of questions about their relationship with their provider and their responses were recorded on a 1 to 5 scale. Participants were asked about how often their provider did the following, including:
- Do they give you advice or information about your health (whether you want it or not)?
- Do they give you reassurance, encouragement, and emotional support (affection) concerning your health?
- Do they criticize you relating to your health?
Patients with PCOS reported they only sometimes "felt satisfied with the emotional support provided during their medical care," including an "inability" to be able to relax and be themselves around their providers; believed their providers were "only sometimes" able to comprehend their health concerns; and "only sometimes" did patients report receiving advice or information about nutrition, the authors found.
Although women reported experiencing significantly greater distrust in their PCP, no significant associations occurred between PCOS patients and trust in their specialists. According to the researchers, this is likely due to the fact PCPs are at the "front-line of healthcare delivery" and are often required to refer patients to other physicians when encountering symptoms outside their scope of expertise. Additionally, the survey did not observe patient experiences across subspecialties, an area that needs to be further investigated, the researchers state, due to recent findings that demonstrate between reproductive endocrinologists and gynecologists and the between the onset of symptoms and PCOS patients receiving a diagnosis.
"Our hope is that folks will start to implement this advice and tailor both their consultation and treatment of women with PCOS with more sensitivity and with the notion that they are really building a partnership," Lujan told . "Women with PCOS require care across a lifespan and for that reason continuity of support is really important."
Researchers reported limitations, including the self-reported nature of the study and the high proportion of white women who responded to the study. They also did not follow-up with repeated prompts or exclude for other physical or psychiatric disorders, which may have affected the results.
Disclosures
The authors report no disclosures.
Primary Source
Journal of the Endocrine Society
Lin A, et al "Trust in physicians and medical experience beliefs differ between women with and without polycystic ovary syndrome" J Endocr Soc 2018; DOI: 10.1210/js.2018-00181.