A Global Survey of Ethnic Indian Women Living with Polycystic Ovary Syndrome: Concerns, Diagnosis Experiences, Quality of Life, and Use of Treatment Methods

Background: Polycystic ovary syndrome (PCOS) is a common endocrinopathy that is highly prevalent in women of Indian ethnicity. Clinical practice guidelines do not adequately consider ethnic-cultural differences in the care of women with PCOS. This study aimed to explore ethnic Indian women’s experiences with PCOS diagnosis and management, their concerns and it’s impact on their quality of life (QoL). Methods: Global online survey of ethnic Indian women of reproductive age living with PCOS. Results: Respondents (n=4409) had a mean age of 26.8 (SD 5.5) years and the majority were diagnosed with one or more co-morbidities (anxiety/depression being the most common). Women waited one year on average before seeking treatment following symptom onset. Irregular periods, cysts on the ovaries and excess unwanted facial hair growth were their three major concerns. Weight and emotional concerns had the greatest impact on QoL. One-third did not receive information on long-term complications, appropriate behavioral advice to improve diet or exercise, or emotional support following diagnosis. Among those who received information at diagnosis, the majority were dissatisfied. Conclusions: Ethnic Indian women wait for a considerable time before seeking medical help for PCOS, have poor QoL relating to weight and mental health and are dissatisfied with the information and support provided at diagnosis. These gaps in care should be addressed in clinical practice and future research.