Widespread dissatisfaction with the length of time it takes to diagnose polycystic ovary syndrome (PCOS) and disappointment at the lack of supporting information provided are two of the main findings from the first large, international survey of women with the condition.
More than 80% of patients surveyed said they were "dissatisfied or indifferent" regarding the information they received about PCOS when it was diagnosed, and more than 50% reported feeling dissatisfied or indifferent with the information provided on medical therapy.
And overall, only 3.4% said they were satisfied with the emotional support and counseling offered after the diagnosis.
The data suggest that "consumer information needs are not being met by existing educational resources, and lack of awareness, accessibility, and suitability of resources may all be contributors," say Melanie Gibson-Helm, PhD, of Monash Center for Health Research and Implementation, School of Public Health and Preventive Medicine, Monash University, Clayton, Australia, and colleagues, who published their results online December 1 in the Journal of Clinical Endocrinology & Metabolism.
"Taken together, these findings are concerning for both affected women and their healthcare providers," they add.
Commenting in an Endocrine Society statement, second author Helena Teede, FRACP, PhD, also of Monash University, said: "Given the prevalence of PCOS, it is important for women and healthcare professionals to be more aware of the condition.
"Despite the misleading name, PCOS is not primarily an ovarian condition but instead is a hormonal disturbance with diverse health effects that are largely inherited. The process of diagnosing PCOS needs to be improved, and the diverse set of metabolic, reproductive, and psychological features need to be understood and addressed," she added.
PCOS: Underrecognized and Underdiagnosed
PCOS affects 9% to 18% of reproductive-age women and is the commonest cause of anovulatory infertility, the authors of the survey explain. Women with PCOS also have a higher-than-average risk of type 2 diabetes, cardiovascular disease, and symptoms of anxiety and depression.
Women are usually diagnosed when they have at least two of the three key features of the condition:
Increased numbers of immature eggs in the ovaries (called polycystic ovaries) seen on ultrasound.
Slightly higher levels of testosterone or clinical symptoms of higher testosterone with excess body hair.
Irregular or no menstrual periods.
Yet, despite its high prevalence, PCOS frequently remains underrecognized and underdiagnosed.
The new survey was conducted in an effort to gather more information about women's diagnosis experiences, information provided, main concerns about PCOS, and support needs, the authors explain.
It consisted of a questionnaire developed by a multidisciplinary expert advisory group and made available on the websites of the two largest PCOS support organizations: PCOS Challenge, based in the United States, and Verity, based in the United Kingdom.
Invitations to participate were issued via the websites, email, and social media to women worldwide. Eligibility criteria included prior diagnosis of PCOS by a doctor and age > 18 years.
The final analysis included data from 1382 women, 732 (53%) of whom reside in North America, and 583 (42%) of whom live in Europe. The remaining participants are from Oceania, Asia, Central, Latin, and South America, the Caribbean, and Africa.
Overall, diagnosis within 6 months was reported by 43.4% of women. However, a third (33.6%) said it took more than 2 years to be diagnosed with PCOS.
Dissatisfaction with the diagnosis experience was reported by 42.4% of women, with another 22.4% recalling feeling "neither satisfied nor dissatisfied." Satisfaction with the experience was reported by only 35.2% of survey respondents..
Nearly half of the women — 47.1% — saw three or more health professionals before receiving a diagnosis.
Vast Majority of Women Not Happy With Info Given on PCOS
The vast majority of the women — (84.4%) — said they felt "dissatisfied or indifferent" with the information they were given about PCOS.
Participants identified difficulty with weight loss, irregular menstrual cycles, infertility, and hirsutism as the four clinical features of most concern.
Dissatisfaction or indifference with information provided about medical therapy was also reported by more than half of respondents (53.7%). Similarly, 43% reported indifference or dissatisfaction with the information provided on lifestyle management of PCOS, and 45.1% said they were given no information at all on the subject.
A majority of patients also said they received no information on the long-term complications of PCOS or opportunities for emotional support or counseling (52.5% and 61.9%, respectively).
Dissatisfaction or indifference with information on the long-term complications was reported by 39.6%, and similar feelings about the emotional support and counseling they received was reported by 34.7%.
In general, women in Europe were less likely than those in North America to report receiving information about the long-term consequences of PCOS, to receive counseling and support, and to feel satisfied. On the other hand, women in other regions of the world were more likely than women in North America to feel satisfied in those areas.
Seeing Lots of Doctors Does Not Bode Well
Seeing three or more healthcare professionals had a negative impact on satisfaction with the diagnosis, as did longer time to diagnosis.
Diagnosis of PCOS may be delayed for many reasons, including lack of a single diagnostic test for PCOS, inconsistent diagnostic criteria, the mistaken perception that ovarian ultrasound is necessary for a diagnosis, and variation in PCOS symptoms due to ethnic, genetic, and environmental factors, to name but a few issues, say Dr Gibson-Helm and colleagues.
But "the significance for women's well-being is suggested by the importance and relief that women attribute to receiving a diagnosis and by a negative association between time to diagnosis and psychological well-being," they add.
Prompt diagnosis also can lead to early interventions for the most troubling clinical features of PCOS. "We suggest that greater community and clinician awareness about the full range of PCOS features is needed internationally to facilitate early diagnosis.
"These major gaps in early diagnosis, education, and support are clear opportunities for improving patient experience," they stress.
"They also inform an initiative to develop international evidence-based guidelines, codesigned consumer and health professional resources, and international dissemination to improve diagnosis experience, education, management, and health outcomes," Dr Gibson-Helm and colleagues conclude.
The authors disclosed no relevant financial relationships.
J Clin Endocrin Metab. Published online December 1, 2016. Abstract
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Cite this: International Survey Finds PCOS-Related Dissatisfaction Is Common - Medscape - Dec 06, 2016.