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

Vibhuti Samarth Rao; Stephanie Cowan; Mike Armour; Caroline A Smith; Birinder S Cheema; Lisa Moran; Siew Lim; Sabrina Gupta; Michael De Manincor; Vikram Sreedhar; Carolyn Ee

doi:10.3390/ijerph192315850

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

Int J Environ Res Public Health. 2022 Nov 28;19(23):15850. doi: 10.3390/ijerph192315850.

Authors

Affiliations

¹ NICM Health Research Institute, Western Sydney University, Penrith 2751, Australia.
² Monash Centre for Health Research and Implementation, Monash University, Clayton 3168, Australia.
³ Medical Research Institute of New Zealand (MRINZ), Wellington 6021, New Zealand.
⁴ School of Health Sciences, Western Sydney University, Penrith 2571, Australia.
⁵ Health Systems and Equity, Eastern Health Clinical School, Monash University, Boxhill 3128, Australia.
⁶ School of Psychology and Public Health, La Trobe University, Melbourne 3086, Australia.
⁷ School of Computer Science and Mathematics, Liverpool John Moores University, Liverpool L3 AF, UK.

Abstract

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 diagnosing and care of women with PCOS. This study aimed to understand co-morbidities, key concerns, quality of life (QoL), and diagnosis experiences of ethnic Indian women living with PCOS.

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 reported having a family history of type 2 diabetes (43%) and PCOS (18%). Most of them (64%) were diagnosed with one or more co-morbidities (anxiety/depression being the most common). Irregular periods, cysts on the ovaries, and excess unwanted facial hair growth were their three top concerns. On average, women experienced symptoms of PCOS at the age of 19.0 (SD 5.0) and were diagnosed at the age of 20.8 years (SD 4.8). We report a one-year delay in seeking medical help and a seven-month diagnostic delay, which were associated with poor satisfaction with the information provided related to PCOS and its treatment options (p < 0.01). Women living outside India reported difficulty losing weight as their most key concern; however, they had higher dissatisfaction with the information provided on diet (OR, 0.74; 95% CI, 0.6 to 0.8; p = 0.002), exercise (OR, 0.74; 95% CI, 0.6 to 0.9; p = 0.002) and behavioural advice (OR, 0.74; 95% CI, 0.6 to 0.9; p = 0.004) than women living in India. Most women reported poor QoL in weight and emotion domains.

Conclusions: Ethnic Indian women experience early onset of PCOS symptoms and delay in seeking professional help. Timely diagnosis, providing cultural-specific education related to lifestyle and weight management, and improving psycho-emotional support are key areas that should be addressed in clinical practice and future research.

Keywords: Indian migrant women; Indian women; PCOS; diagnosis; key concerns; polycystic ovary syndrome; quality of life; satisfaction; survey; treatment methods.

MeSH terms

Adult
Delayed Diagnosis
Diabetes Mellitus, Type 2* / complications
Female
Humans
Menstruation Disturbances / complications
Polycystic Ovary Syndrome* / diagnosis
Polycystic Ovary Syndrome* / epidemiology
Polycystic Ovary Syndrome* / therapy
Quality of Life
Young Adult

Grants and funding

This research received no external funding.