Diagnosis Experiences in Individuals With Lean Polycystic Ovary Syndrome

To examine the diagnosis experience in an international sample of people with lean polycystic ovary syndrome (PCOS).

Cross-sectional study with open-ended questions.

Online.

A total of 150 people with lean PCOS who met eligibility criteria.

An electronic survey was distributed on social media. Survey questions were adapted from previously published research. Categorical data were analyzed as count and proportions. Chi-square tests were used to examine factors associated with diagnosis experience satisfaction. Post hoc analysis was conducted using adjusted standardized residuals. Statistical significance was set at p < .05. Qualitative data were analyzed with an inductive thematic approach.

Approximately 49.0% (n = 72) of participants reported diagnosis experience dissatisfaction, 72.8% (n = 99) disagreed that there is adequate information about lean PCOS, and 80.2% (n = 109) disagreed that health professionals have adequate knowledge about lean PCOS. Significant associations were found between length of time to diagnosis and diagnosis satisfaction (p = .001, χ² = 18.133, df = 4, Cramer's V = 0.258) and number of medical professionals seen and diagnosis satisfaction (p < .001, χ² = 18.095, df = 2, Cramer's V = 0.362). Main PCOS concerns included irregular menstrual cycles (n = 108, 72.0%), hormone imbalance (n = 97, 64.7%), and anxiety (n = 74, 49.3%). Qualitative analyses revealed that participants received limited PCOS management information and felt providers were dismissive of them.

The diagnosis experience for people with lean PCOS includes high feelings of dissatisfaction. Opportunities exist to expand education about lean PCOS among students and clinicians, provide quality resources to support lifestyle modification in patients with lean PCOS, and listen to the needs of each individual. Future research should further examine the lean subset of people with PCOS.