Are expanding disease definitions unnecessarily labelling women with polycystic ovary syndrome?

Copp, Tessa; Jansen, Jesse; Doust, Jenny; Mol, Ben Willem J.; Dokras, Anuja; McCaffery, Kirsten

doi:10.1136/bmj.j3694

Cited by 42 publications

(39 citation statements)

References 60 publications

(38 reference statements)

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“…As such, this confusion may sometimes skew prevalence rates significantly, as ovarian cysts alone should not be seen as a symptom of PCOS. Copp et al speculated that over-diagnosis could also be due to the inclusion of more phenotypes in diagnostic criteria, as well as the recent inclusion of non-hyperandrogenic phenotypes under the Rotterdam criteria [ 21 ]. Non-hyperandrogenic women were found to have fewer long-term cofactor association with PCOS, and in some cases, were misdiagnosed with PCOS entirely, as menstrual irregularity and polycystic ovaries can be associated with other, unrelated conditions [ 21 ].…”

Section: Reviewmentioning

confidence: 99%

“…Copp et al speculated that over-diagnosis could also be due to the inclusion of more phenotypes in diagnostic criteria, as well as the recent inclusion of non-hyperandrogenic phenotypes under the Rotterdam criteria [ 21 ]. Non-hyperandrogenic women were found to have fewer long-term cofactor association with PCOS, and in some cases, were misdiagnosed with PCOS entirely, as menstrual irregularity and polycystic ovaries can be associated with other, unrelated conditions [ 21 ]. It is important to continue pushing diagnosis criteria to be as effective as possible, as the misdiagnosis of PCOS accomplishes nothing more than skewing prevalence rates and potentially preventing women from getting the accurate, appropriate care they need.…”

Section: Reviewmentioning

confidence: 99%

See 1 more Smart Citation

Geographical Prevalence of Polycystic Ovary Syndrome as Determined by Region and Race/Ethnicity

Wolf¹,

Wattick

Kinkade

et al. 2018

IJERPH

294

179

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Polycystic ovarian syndrome (PCOS) is thought to be the most common endocrine disorder found in women. Common symptoms include irregular menstrual cycle, polycystic ovaries, and hirsutism, as well as an increased risk for a multitude of conditions, including insulin resistance, dyslipidemia and infertility. The prevalence of polycystic ovarian syndrome is generally thought to be between 3% and 10% but it is widely unknown for specific subpopulations based on geographical location and race/ethnicity. Based on the high degree of variability and inconsistencies between the different diagnostic criteria, there is a unique challenge that exists when determining the prevalence of this syndrome. There are a large percentage of individuals that remain undiagnosed even after visiting multiple health care providers. Most studies conducted across the world are limited by small sample size, selection bias, and lack of comparability across studies. There have been very few studies that have examined the prevalence of polycystic ovary syndrome across the United States. Based on the National Institutes of Health (NIH)’s diagnostic criteria, there is a similar prevalence of PCOS documented across the United States, the United Kingdom, Spain, Greece, Australia, and Mexico. Other studies have shown some differences between geographical location and race. The existing data is not conclusive enough to determine whether or not there is any significant differences in the prevalence of PCOS across geographical location, racial or ethnic groups. This review will seek to determine the prevalence of polycystic ovarian syndrome based on geographical location and race/ethnicity.

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Section: Reviewmentioning

confidence: 99%

Section: Reviewmentioning

confidence: 99%

Geographical Prevalence of Polycystic Ovary Syndrome as Determined by Region and Race/Ethnicity

Wolf¹,

Wattick

Kinkade

et al. 2018

IJERPH

294

179

View full text Add to dashboard Cite

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“…Given this complexity and uncertainty, it is not surprising that many women report experiencing long delays and seeing multiple providers before receiving a diagnosis (Gibson-Helm et al , 2016), resulting in a negative impact on psychosocial outcomes and quality of life (Kitzinger and Willmott, 2002; Avery and Braunack-Mayer, 2007). To add to the uncertainty, diagnostic criteria for PCOS have expanded over time (Table I) to include women with milder phenotypes of PCOS (such as those without signs of androgen excess), without clear evidence of benefit (Wang and Mol, 2017), increasing the number of women diagnosed (Copp et al , 2017a; Skiba et al , 2018). As a result, there is concern over both underdiagnosis and overdiagnosis of PCOS (Copp et al , 2017a; Gibson-Helm et al , 2016; Skiba et al , 2018).…”

Section: Introductionmentioning

confidence: 99%

“…To add to the uncertainty, diagnostic criteria for PCOS have expanded over time (Table I) to include women with milder phenotypes of PCOS (such as those without signs of androgen excess), without clear evidence of benefit (Wang and Mol, 2017), increasing the number of women diagnosed (Copp et al , 2017a; Skiba et al , 2018). As a result, there is concern over both underdiagnosis and overdiagnosis of PCOS (Copp et al , 2017a; Gibson-Helm et al , 2016; Skiba et al , 2018).…”

Section: Introductionmentioning

confidence: 99%

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

Copp

Hersch

Muscat

et al. 2019

Human Reproduction Open

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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

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“…During a year of follow-up and with decreased physical activity, she established regular menses. In a recent review by Copp et al entitled "Are expanding disease definitions unnecessarily labeling women with polycystic ovary syndrome," this exact scenario was discussed [5]. In the absence of a detailed history, this is very likely to apply to many of the normoandrogenic patients with irregular menses and multicystic ovaries labeled as PCOS.…”

Section: Casementioning

confidence: 99%

Functional hypothalamic amenorrhea: case presentations and overview of literature

Nader¹

2018

Hormones

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Functional hypothalamic amenorrhea is a form of chronic anovulation not due to identifiable organic causes with adverse health consequences. A thorough history is paramount in the identification of women with this disorder as it is usually associated with lifestyle factors such as stress, weight loss, and excessive exercise. In this paper, recently published clinical guidelines are reviewed and a series of cases is presented that highlights diagnostic and therapeutic challenges encountered.

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Are expanding disease definitions unnecessarily labelling women with polycystic ovary syndrome?

Cited by 42 publications

References 60 publications

Geographical Prevalence of Polycystic Ovary Syndrome as Determined by Region and Race/Ethnicity

Geographical Prevalence of Polycystic Ovary Syndrome as Determined by Region and Race/Ethnicity

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

Functional hypothalamic amenorrhea: case presentations and overview of literature

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