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 and Carolyn Ee
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Vibhuti Samarth Rao: NICM Health Research Institute, Western Sydney University, Penrith 2751, Australia
Stephanie Cowan: Monash Centre for Health Research and Implementation, Monash University, Clayton 3168, Australia
Mike Armour: NICM Health Research Institute, Western Sydney University, Penrith 2751, Australia
Caroline A. Smith: NICM Health Research Institute, Western Sydney University, Penrith 2751, Australia
Birinder S. Cheema: School of Health Sciences, Western Sydney University, Penrith 2571, Australia
Lisa Moran: Monash Centre for Health Research and Implementation, Monash University, Clayton 3168, Australia
Siew Lim: Health Systems and Equity, Eastern Health Clinical School, Monash University, Boxhill 3128, Australia
Sabrina Gupta: School of Psychology and Public Health, La Trobe University, Melbourne 3086, Australia
Michael De Manincor: NICM Health Research Institute, Western Sydney University, Penrith 2751, Australia
Vikram Sreedhar: School of Computer Science and Mathematics, Liverpool John Moores University, Liverpool L3 AF, UK
Carolyn Ee: NICM Health Research Institute, Western Sydney University, Penrith 2751, Australia

IJERPH, 2022, vol. 19, issue 23, 1-20

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 lesser satisfaction 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: polycystic ovary syndrome; PCOS; key concerns; diagnosis; satisfaction; quality of life; treatment methods; Indian women; survey; Indian migrant women (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2022
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