The diagnosis and lived experience of polycystic ovary syndrome: A qualitative study.
OBJECTIVE
To explore the impact of the diagnosis of polycystic ovary syndrome on health/ill health identity, how women experience this diagnosis and their health beliefs.


BACKGROUND
Polycystic ovary syndrome is a common and heterogeneous condition, giving rise to a wide range of different health concerns. Previous research on polycystic ovary syndrome has been dominated by the medical perspective and less is known about the experiences and needs of women.


METHODS
A qualitative study of 32 premenopausal adult women with polycystic ovary syndrome (diagnosis confirmed by Rotterdam criteria), aged between 18 and 45 years, recruited from a primary and secondary care setting.


METHODS
Thematic analysis of transcripts from 11 focus groups conducted between 2013-2015.


RESULTS
Women identified a range of concerns affecting personal and reproductive identity, health knowledge and beliefs: (1) delays and barriers to diagnosis; (2) general lack of empathy by the medical profession; (3) difficulty in accessing specialist referral; (4) lack of information from professionals; (5) inconsistent and sometimes unsatisfactory experiences with medications; (6) insufficient help and advice regarding in/fertility; (7) relative lack of awareness or concern about longer term risks such as diabetes; and (8) significant discrepancies between the beliefs of women with polycystic ovary syndrome and how they experienced the attitudes of healthcare professionals.


CONCLUSIONS
There appears to be a divergence between women's experience and attitudes of healthcare professionals. The diagnosis, support and lived experience of women with polycystic ovary syndrome could be enhanced by better professional recognition of these concerns, improved knowledge and communication about polycystic ovary syndrome and better access to support and specialist advice.
Pool Health Centre, Cornwall, UK.|St. Austell Healthcare, Cornwall, UK.|Plymouth University Peninsula Schools of Medicine and Dentistry, Plymouth, UK.
Julie
http://orcid.org/0000-0003-4116-9091
J
Tomlinson
Plymouth University Peninsula Schools of Medicine and Dentistry, Plymouth, UK.|Department of Endocrinology, Plymouth Hospitals NHS Trust, Plymouth, UK.
Jonathan
J
Pinkney
Faculty of Health and Human Sciences, Plymouth University, Plymouth, UK.
Linda
L
Adams
School of Midwifery, Plymouth University, Plymouth, UK.
Elizabeth
E
Stenhouse
Faculty of Health and Human Sciences, Plymouth University, Plymouth, UK.
Alison
A
Bendall
Faculty of Health, Social Care and Education, Anglia Ruskin University, Chelmsford, UK.
Oonagh
O
Corrigan
Faculty of Health and Human Sciences, Plymouth University, Plymouth, UK.
Gayle
G
Letherby
D000293:Adolescent; D000328:Adult; D005260:Female; D006801:Humans; D011085:Polycystic Ovary Syndrome / Q000175:diagnosis* / Q000503:physiopathology / Q000523:psychology*; D017697:Premenopause; D036301:Qualitative Research; D055815:Young Adult
beliefs; diagnosis; empathy; knowledge; lived experience; long-term risks; polycystic ovary syndrome; qualitative study