scholarly journals Women’s experiences of diagnosis and management of polycystic ovary syndrome: a mixed-methods study in general practice

2020 ◽  
Vol 70 (694) ◽  
pp. e322-e329 ◽  
Author(s):  
Sarah C Hillman ◽  
Carol Bryce ◽  
Rachel Caleychetty ◽  
Jeremy Dale
Keyword(s):  
Mental Health ◽  
General Practice ◽  
Mixed Methods ◽  
Polycystic Ovary Syndrome ◽  
Mental Health Problems ◽  
Polycystic Ovary ◽  
Mixed Methods Study ◽  
Ovary Syndrome ◽  
Women’S Experiences ◽  
Women's Experiences

BackgroundPolycystic ovary syndrome (PCOS) is a common lifelong metabolic condition with serious associated comorbidities. Evidence points to a delay in diagnosis and inconsistency in the information provided to women with PCOS.AimTo capture women’s experiences of how PCOS is diagnosed and managed in UK general practice.Design and settingThis was a mixed-methods study with an online questionnaire survey and semi-structured telephone interviews with a subset of responders.MethodAn online survey to elicit women’s experiences of general practice PCOS care was promoted by charities and BBC Radio Leicester. The survey was accessible online between January 2018 and November 2018. A subset of responders undertook a semi-structured telephone interview to provide more in-depth data.ResultsA total of 323 women completed the survey (average age 35.4 years) and semi-structured interviews were conducted with 11 women. There were five key themes identified through the survey responses. Participants described a variable lag time from presentation to PCOS diagnosis, with a median of 6–12 months. Many had experienced mental health problems associated with their PCOS symptoms, but had not discussed these with the GP. Many were unable to recall any discussion about associated comorbidities with the GP. Some differences were identified between the experiences of women from white British backgrounds and those from other ethnic backgrounds.ConclusionFrom the experiences of the women in this study, it appears that PCOS in general practice is not viewed as a long-term condition with an increased risk of comorbidities including mental health problems. Further research should explore GPs’ awareness of comorbidities and the differences in PCOS care experienced by women from different ethnic backgrounds.

scholarly journals A mixed-methods study of coping and depression in adolescent girls with polycystic ovary syndrome

2019 ◽  
Vol 31 (3) ◽  
pp. 189-197 ◽  
Author(s):  
Casey S. Hopkins ◽  
Laura P. Kimble ◽  
Helen F. Hodges ◽  
Anne F. Koci ◽  
Benjie B. Mills
Keyword(s):  
Mixed Methods ◽  
Polycystic Ovary Syndrome ◽  
Adolescent Girls ◽  
Polycystic Ovary ◽  
Mixed Methods Study ◽  
Ovary Syndrome

scholarly journals The benefits and harms of receiving a polycystic ovary syndrome diagnosis: a qualitative study of women’s experiences

2019 ◽  
Vol 2019 (4) ◽  
Author(s):  
T Copp ◽  
J Hersch ◽  
D M Muscat ◽  
K J McCaffery ◽  
J Doust ◽  
...  
Keyword(s):  
Polycystic Ovary Syndrome ◽  
Symptom Severity ◽  
Polycystic Ovary ◽  
Research Network ◽  
Ovary Syndrome ◽  
Women’S Experiences ◽  
Women's Experiences ◽  
Life Plans ◽  
The Impact

Abstract STUDY QUESTION What are the benefits and harms of receiving a polycystic ovary syndrome (PCOS) diagnosis in a community sample of women, including impact on psychosocial wellbeing, lifestyle choices and behaviour? SUMMARY ANSWER Although some women benefit considerably from the diagnosis, such as through increased awareness and reassurance, women with minimal symptoms may experience more harm than benefit, including long-lasting anxiety and altered life plans. WHAT IS KNOWN ALREADY Disease labels can validate symptoms and play a vital role in understanding and coping with illness; however, they can also cause harm by evoking illness schemas about severity and permanence. Regarding PCOS, the diagnostic criteria have expanded over time to include women with milder phenotypes (such as those without signs of androgen excess). This has occurred despite limited investigation of the benefits and harms of the diagnosis and has increased the number of women diagnosed. STUDY DESIGN, SIZE, DURATION Semi-structured interviews were conducted face-to-face or by telephone with 26 participants from April–July 2018 to explore women’s experiences with the diagnosis, including the benefits and harms of receiving the diagnosis and the impact on their life. PARTICIPANTS/MATERIALS, SETTING, METHODS In total, 26 women in the community self-reporting a diagnosis of PCOS (reporting mild to severe symptoms) made by a medical doctor, aged 18–45 years and living in Australia were recruited through social media. Data were analysed thematically using Framework analysis. MAIN RESULTS AND THE ROLE OF CHANCE The study identified a range of both positive and negative effects of a PCOS diagnosis in the immediate, short and long-term, which were influenced by symptom severity, expectations and experience. For women with previously unexplained and bothersome symptoms, it was a relief to receive a diagnosis, and this resulted in an increased understanding about the importance of a healthy lifestyle. By contrast, women with milder symptoms often reported feeling shocked and overwhelmed by the diagnosis, consequently experiencing anxiety about the associated long-term risks. The majority of women, regardless of symptom severity, experienced prolonged worry and anxiety about infertility, resulting for some in risk taking with contraception, unintended pregnancies, pressure to conceive early or altered life plans. With time, many women developed positive coping strategies and perceived the diagnosis to be valuable, including those who felt they had experienced minimal benefit or even harm. LIMITATIONS, REASONS FOR CAUTION PCOS diagnosis was self-reported and the sample was highly educated. WIDER IMPLICATIONS OF THE FINDINGS Fear of infertility was salient for many women, underscoring the need for accurate information, counselling and reassurance of fertility potential. Given the risk of significant consequences, health professionals should use a tailored approach to PCOS diagnosis to increase the benefits of appropriate and timely diagnosis for women affected by significant symptoms, while reducing the harms of unnecessarily labelling healthy women for whom the benefits of a diagnosis are small. STUDY FUNDING/COMPETING INTEREST(S) The study was funded by the University of Sydney Lifespan Research Network and an NHMRC Program Grant (APP1113532). B.W.M. reports consultancy for ObsEva, Merck, Merck KGaA and Guerbet. No further competing interests exist. TRIAL REGISTRATION NUMBER N/A

scholarly journals Women's experiences of polycystic ovary syndrome diagnosis

2014 ◽  
Vol 31 (5) ◽  
pp. 545-549 ◽  
Author(s):  
M. E. Gibson-Helm ◽  
I. M. Lucas ◽  
J. A. Boyle ◽  
H. J. Teede
Keyword(s):  
Polycystic Ovary Syndrome ◽  
Polycystic Ovary ◽  
Ovary Syndrome ◽  
Women’S Experiences ◽  
Women's Experiences ◽  
Syndrome Diagnosis
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