Illness perceptions of women living with polycystic ovary syndrome

PCOS is a chronic illness that affects approximately five million premenopausal women in the US and is associated with significant cosmetic, reproductive, metabolic, and psychological consequences.  Despite its prevalence, few studies have explored the lived experiences and illness perceptions of women living with (WLW) PCOS.  Identifying these is important, because mounting research suggests that a person’s perceptions of their chronic illness and its management determine that person’s coping behaviors (e.g., adherence, self-management) and, consequently, illness outcomes.

Thirty-four women living with PCOS were recruited using targeted advertising on social networking sites. The interview guide was based on the constructs of the Common Sense Model (CSM) and interview data were subject to content analysis. The mean age of  participants was 33.6 years.  Respondents were primarily non-Hispanic (97.1%), white (94.1%), straight (85.3%), and married (64.7%) with a college education (82.4%).  On average, participants reported living with PCOS for 10.9 years.  In addition, almost half of the total sample reported heights and weights that placed them in the morbidly obese category (BMI>35).  Lastly, a history of depression (70.6%) and anxiety (64.7%) was common among participants.

Overall, this study identifies a number of implications for patient education, provider education, clinical practice, and policy improvements.  Examples include addressing (1) unmet information needs, (2) significant psychological morbidity and unmet mental health needs, (3) breastfeeding challenges and need for breastfeeding support, (4) poor quality of care and low patient satisfaction, and (5) limited access to care – all among women living with PCOS.