Women with Polycystic Ovary Syndrome: A Marginalized Population in the United States

2020 ◽  
Vol 45 (1) ◽  
pp. 40-46 ◽  
Author(s):  
Ninive Sanchez
Keyword(s):  
United States ◽  
Polycystic Ovary Syndrome ◽  
Health Care Providers ◽  
Polycystic Ovary ◽  
Public Health Problem ◽  
The United States ◽  
Standards Of Care ◽  
Major Public Health Problem ◽  
Care Providers ◽  
Ovary Syndrome

Abstract The National Institutes of Health has identified polycystic ovary syndrome (PCOS) as a major public health problem for women in the United States and recommends establishing multidisciplinary programs to improve the awareness of the public and health care providers regarding management for women with PCOS. This article argues that individuals with PCOS are marginalized due to the syndrome’s misleading name; its underrepresentation in research; lack of culturally and gender-sensitive standards of care; debates about the contraceptive mandate; and stigmatization due to symptoms that do not conform to dominant social constructs of beauty, femininity, and womanhood. The article directs readers to key publications on the assessment and treatment of patients with PCOS, discusses a case study that illustrates the role of a social worker in treating an adolescent with PCOS as part of a multidisciplinary team, and emphasizes the importance of integrating behavioral health in the treatment of patients with PCOS.

scholarly journals Measures of Patient Dissatisfaction With Health Care in Polycystic Ovary Syndrome: Retrospective Analysis (Preprint)

2019 ◽  
Author(s):  
Luis R Hoyos ◽  
Manesha Putra ◽  
Abigail A Armstrong ◽  
Connie Y Cheng ◽  
Carrie K Riestenberg ◽  
...  
Keyword(s):  
United States ◽  
Health Care ◽  
Polycystic Ovary Syndrome ◽  
Health Care Providers ◽  
Polycystic Ovary ◽  
The Internet ◽  
Care Providers ◽  
Ovary Syndrome ◽  
Patient Dissatisfaction ◽  
The Web

BACKGROUND Polycystic ovary syndrome (PCOS) is a common reproductive and metabolic disorder in women; however, many clinicians may not be well versed in scientific advances that aid understanding of the associated reproductive, metabolic, and psychological abnormalities. Women with PCOS are dissatisfied with health care providers, the diagnostic process, and the initial treatment of PCOS and seek information through alternative sources. This has affected the patient-physician relationship by allowing medical information acquired through the internet, whether correct or not, to become accessible to patients and reshape their health care perspective. Patient dissatisfaction with health care providers regarding PCOS raises questions about the responsibilities of academic institutions to adequately train and maintain the competence of clinicians and government agencies to sufficiently support scientific investigation in this field. OBJECTIVE The primary aim was to examine internet searching behaviors of the public regarding PCOS vs another highly prevalent gynecologic disorder. The secondary aim was to explore satisfaction with health care among patients with PCOS and their internet use. The tertiary aim was to examine medical education in reproductive endocrinology and infertility (REI) during obstetrics and gynecology (Ob/Gyn) residency as a proxy for physician knowledge in this field. METHODS Google search trends and StoryBase quantified monthly Google absolute search volumes for search terms related to PCOS and fibroids (January 2004 to December 2017; United States). The reproductive disorder, fibroids, was selected as a comparison group because of its high prevalence among women. Between female groups, monthly absolute search volumes and their trends were compared. A Web-based questionnaire (June 2015 to March 2018) explored health care experiences and the internet use of women with PCOS. REI rotation information during Ob/Gyn residency in the United States was obtained from the Association of Professors of Gynecology and Obstetrics website. RESULTS For PCOS (<i>R</i>=0.89; <i>P</i>&lt;.01), but not fibroids (<i>R</i>=0.09; <i>P</i>=.25), monthly absolute search volumes increased significantly. PCOS-related monthly absolute search volumes (mean 384,423 searches, SD 88,756) were significantly greater than fibroid-related monthly absolute search volumes (mean 348,502 searches, SD 37,317; <i>P</i>&lt;.05). PCOS was diagnosed by an Ob/Gyn in 60.9% (462/759) of patients, and 57.3% (435/759) of patients were dissatisfied with overall care. Among patients with PCOS, 98.2% (716/729) searched for PCOS on the Web but only 18.8% (143/729) of patients joined an online PCOS support group or forum. On average, Ob/Gyn residencies dedicated only 4% (2/43) of total block time to REI, whereas 5.5% (11/200) of such residencies did not offer any REI rotations. CONCLUSIONS Over time, PCOS has been increasingly searched on the Web compared with another highly prevalent gynecologic disorder. Patients with PCOS are dissatisfied with their health care providers, who would benefit from an improved understanding of PCOS during Ob/Gyn residency training.

scholarly journals Measures of Patient Dissatisfaction With Health Care in Polycystic Ovary Syndrome: Retrospective Analysis

10.2196/16541 ◽  
2020 ◽  
Vol 22 (4) ◽  
pp. e16541 ◽  
Author(s):  
Luis R Hoyos ◽  
Manesha Putra ◽  
Abigail A Armstrong ◽  
Connie Y Cheng ◽  
Carrie K Riestenberg ◽  
...  
Keyword(s):  
United States ◽  
Health Care ◽  
Polycystic Ovary Syndrome ◽  
Health Care Providers ◽  
Polycystic Ovary ◽  
The Internet ◽  
Care Providers ◽  
Ovary Syndrome ◽  
Patient Dissatisfaction ◽  
The Web

Background Polycystic ovary syndrome (PCOS) is a common reproductive and metabolic disorder in women; however, many clinicians may not be well versed in scientific advances that aid understanding of the associated reproductive, metabolic, and psychological abnormalities. Women with PCOS are dissatisfied with health care providers, the diagnostic process, and the initial treatment of PCOS and seek information through alternative sources. This has affected the patient-physician relationship by allowing medical information acquired through the internet, whether correct or not, to become accessible to patients and reshape their health care perspective. Patient dissatisfaction with health care providers regarding PCOS raises questions about the responsibilities of academic institutions to adequately train and maintain the competence of clinicians and government agencies to sufficiently support scientific investigation in this field. Objective The primary aim was to examine internet searching behaviors of the public regarding PCOS vs another highly prevalent gynecologic disorder. The secondary aim was to explore satisfaction with health care among patients with PCOS and their internet use. The tertiary aim was to examine medical education in reproductive endocrinology and infertility (REI) during obstetrics and gynecology (Ob/Gyn) residency as a proxy for physician knowledge in this field. Methods Google search trends and StoryBase quantified monthly Google absolute search volumes for search terms related to PCOS and fibroids (January 2004 to December 2017; United States). The reproductive disorder, fibroids, was selected as a comparison group because of its high prevalence among women. Between female groups, monthly absolute search volumes and their trends were compared. A Web-based questionnaire (June 2015 to March 2018) explored health care experiences and the internet use of women with PCOS. REI rotation information during Ob/Gyn residency in the United States was obtained from the Association of Professors of Gynecology and Obstetrics website. Results For PCOS (R=0.89; P<.01), but not fibroids (R=0.09; P=.25), monthly absolute search volumes increased significantly. PCOS-related monthly absolute search volumes (mean 384,423 searches, SD 88,756) were significantly greater than fibroid-related monthly absolute search volumes (mean 348,502 searches, SD 37,317; P<.05). PCOS was diagnosed by an Ob/Gyn in 60.9% (462/759) of patients, and 57.3% (435/759) of patients were dissatisfied with overall care. Among patients with PCOS, 98.2% (716/729) searched for PCOS on the Web but only 18.8% (143/729) of patients joined an online PCOS support group or forum. On average, Ob/Gyn residencies dedicated only 4% (2/43) of total block time to REI, whereas 5.5% (11/200) of such residencies did not offer any REI rotations. Conclusions Over time, PCOS has been increasingly searched on the Web compared with another highly prevalent gynecologic disorder. Patients with PCOS are dissatisfied with their health care providers, who would benefit from an improved understanding of PCOS during Ob/Gyn residency training.

Health Care-Related Economic Burden of Polycystic Ovary Syndrome in the United States: Pregnancy-Related and Long-Term Health Consequences

2021 ◽  
Author(s):  
Carrie Riestenberg ◽  
Anika Jagasia ◽  
Daniela Markovic ◽  
Richard P Buyalos ◽  
Ricardo Azziz
Keyword(s):  
United States ◽  
Polycystic Ovary Syndrome ◽  
Economic Burden ◽  
Polycystic Ovary ◽  
The United States ◽  
Reproductive Age ◽  
Cochrane Library ◽  
Control Group ◽  
Ovary Syndrome

Abstract Context Polycystic ovary syndrome (PCOS) is the most common endocrine disorder of reproductive-aged women, affecting approximately 5-20% of women of reproductive age. A previous estimate noted that the economic burden of PCOS approximates $3.7 billion annually in 2020 USD when considering only the costs of the initial diagnosis and of reproductive endocrine morbidities, not considering the costs of pregnancy-related and long-term morbidities. Objective To estimate the excess prevalence and economic burden of pregnancy-related and long-term health morbidities attributable to PCOS. Data Sources PubMed, EmBase and Cochrane Library. Study Selection Studies in which the diagnosis of PCOS was consistent with the Rotterdam, National Institutes of Health (NIH), or Androgen Excess & PCOS (AE-PCOS) Society criteria, or that used electronic medical record diagnosis codes, or diagnosis based on histopathologic sampling were eligible for inclusion. Studies that included an outcome of interest and a control group of non-PCOS patients who were matched or controlled for body mass index (BMI) were included. Data Extraction Two investigators working independently extracted data on study characteristics and outcomes. Data Synthesis Data was pooled using random-effects meta-analysis. The I 2statistic was used to assess inter-study heterogeneity. The quality of selected studies was assessed using the Newcastle-Ottawa Scale. Results The additional total healthcare-related economic burden due to pregnancy-related and long-term morbidities associated with PCOS in the United States is estimated to be $4.3 billion annually in 2020 USD. Conclusions Together with our prior analysis, the economic burden of PCOS is estimated at $8 billion annually in 2020 USD.

scholarly journals Understanding and supporting women with polycystic ovary syndrome: a qualitative study in an ethnically diverse UK sample

2017 ◽  
Vol 6 (5) ◽  
pp. 323-330 ◽  
Author(s):  
Michelle Hadjiconstantinou ◽  
Hamidreza Mani ◽  
Naina Patel ◽  
Miles Levy ◽  
Melanie Davies ◽  
...  
Keyword(s):  
Psychological Distress ◽  
Polycystic Ovary Syndrome ◽  
Health Care Providers ◽  
Polycystic Ovary ◽  
Ethnically Diverse ◽  
Comparative Approach ◽  
Care Providers ◽  
Structured Interviews ◽  
Ovary Syndrome ◽  
Group Education

Objective Polycystic ovary syndrome (PCOS) is a lifelong condition. Its symptoms have been linked with psychological consequences, but less attention has been given to the daily implications of living with PCOS. We aimed to explore women’s experiences living with PCOS, and the potential acceptability of group education sessions for this target group. Methods Women with PCOS were recruited from an ethnically diverse UK community. Twelve semi-structured interviews were conducted. Analysis was underpinned by the constant comparative approach and involved the identification and exploration of key themes. Results Participants reported a range of symptoms linked with PCOS, including problems relating to menstruation and weight difficulties. Hirsutism was reported as the most distressing symptom. Emergent themes included perceptions about symptoms and delays in receiving a diagnosis; psychological distress; practical implications of living with the condition; coping with PCOS and perceived support needs. Some findings were specific to cultural backgrounds. Participants were supportive of the idea of group education for women with PCOS and suggested a need to provide education within the community and health care providers. Discussion Women with PCOS experience high psychological distress and difficulties with coping with their condition. Suggested strategies to reduce the negative psychological impact include education at various levels.

scholarly journals Comparative Success of Recruitment Strategies for an Exercise Intervention Trial Among Women With Polycystic Ovary Syndrome: Observational Study

10.2196/25208 ◽  
2021 ◽  
Vol 23 (3) ◽  
pp. e25208
Author(s):  
Jamie L Benham ◽  
Jane E Booth ◽  
Christine M Friedenreich ◽  
Doreen M Rabi ◽  
Ronald J Sigal
Keyword(s):  
Polycystic Ovary Syndrome ◽  
Health Care Providers ◽  
Exercise Intervention ◽  
Polycystic Ovary ◽  
Recruitment Strategy ◽  
Recruitment Strategies ◽  
Care Providers ◽  
Ovary Syndrome ◽  
Traditional Media ◽  
Time Investment

Background Effective and efficient participant recruitment is a key determinant of the success of a research program. Previously reported recruitment strategies have displayed variable success rates in studies on women with polycystic ovary syndrome (PCOS). Objective This study aimed to evaluate the effectiveness and cost per participant of the recruitment strategies that we used in a prospective randomized controlled trial to examine the effects of exercise training among inactive women with PCOS, who are aged 18-40 years. Methods The 4 recruitment methods we used were as follows: (1) referral by health care providers or by word of mouth, (2) media (eg, local newspaper stories and radio interviews), (3) Facebook advertisements, and (4) unpaid advertisements including posters and websites. The proportions of potential, eligible, and enrolled participants recruited with each method were determined and compared using tests of proportion. The time investment and cost per participant enrolled were calculated for each recruitment strategy. Results Of 200 potential participants screened, 98 (49%) were recruited from unpaid advertisements (posters and websites), 70 (35%) from Facebook advertisements, 16 (8%) by referral, and 16 (8%) from traditional media (newspaper and radio). Every potential participant was recruited from separate means (ie, no participant was approached through more than one recruitment method). A total of 109 (54.5%) women were deemed eligible for participation in the trial, and 60 (30.0%) were enrolled. The proportion of potential participants who completed the trial was higher for those recruited from traditional media than from Facebook advertisements (n=7/16, 44% vs n=13/70, 19%, respectively; P=.03) or unpaid advertisements (n=7/16, 44% vs n=13/98, 13%, respectively; P=.002). The cost per participant was Can $18.21 (US $14.46) for Facebook advertisements and Can $43.88 (US $34.85) for unpaid advertisements. There were no direct trial costs for referrals or traditional media. Conclusions For this trial, each method was important for recruiting inactive women with PCOS because no participant reported learning about the trial through more than one method. Unpaid advertisements and Facebook advertisements helped recruit the largest number of participants in the trial, the former resulting in a higher cost per participant than the latter. Trial Registration ClinicalTrials.gov NCT03362918; https://clinicaltrials.gov/ct2/show/NCT03362918

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

2018 ◽  
Vol 15 (11) ◽  
pp. 2589 ◽  
Author(s):  
Wendy Wolf ◽  
Rachel Wattick ◽  
Olivia Kinkade ◽  
Melissa Olfert
Keyword(s):  
United States ◽  
Polycystic Ovary Syndrome ◽  
Diagnostic Criteria ◽  
Polycystic Ovarian Syndrome ◽  
Polycystic Ovary ◽  
Geographical Location ◽  
The United States ◽  
Ovary Syndrome ◽  
Race Ethnicity ◽  
Ovarian Syndrome

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.

Inhibition of HIF-1α Signaling in the Ovaries of Sprague-Dawley Rats with Polycystic Ovary Syndrome

2014 ◽  
Vol 998-999 ◽  
pp. 260-264
Author(s):  
Fan Wang ◽  
Yan Qing Wu ◽  
Kai Zhuan Xiao ◽  
Zheng Hong Zhang ◽  
Qing Wang ◽  
...  
Keyword(s):  
Polycystic Ovary Syndrome ◽  
Protein Expression ◽  
Rat Model ◽  
Polycystic Ovary ◽  
Mrna Level ◽  
Public Health Problem ◽  
Major Public Health Problem ◽  
Mrna Levels ◽  
Sprague Dawley ◽  
Ovary Syndrome

Polycystic ovary syndrome (PCOS) is a major public health problem in reproductive-aged women worldwide, but the precise pathogenesis of PCOS remains unclear. Our previous study has clarified that hypoxia-inducible factor-1alpha (HIF-1α) mediated endthlin-2 (ET-2) signaling plays an important role in the ovulatory process in rats. Therefore, the present study used PCOS rat model to test the hypothesis that HIF-1α signaling is inhibited in ovaries during PCOS fromation. By the changed of bodyweight, ovarian histology and ovarian weight, PCOS rat model was further confirmed. And then the present study examined the changes of ET-2 and HIF-1α mRNA levels through real-time PCR finding the significant decrease of ET-2 mRNA level in PCOS rat ovaries was found, while HIF-1α mRNA significantly increased. However, by western blot analysis, the present study found HIF-1α protein expression was significantly decreased, which is consistent with ET-2 protein expression implying HIF-1α-medated ET-2 signaling is vital during PCOS formation. Moreover, the result of HIF prolyl hyodroxylase activity analysis found the decrease of HIF-1α protein may be caused through HIF protein degradation by the increased HIF prolyl hyodroxylase activity. Taken together, these results indicate that HIF-1α signaling is inhibited in PCOS rat model through increase of HIF prolyl hyodroxylase activity suggesting HIF-1α signaling plays an important role in the formation of PCOS. This HIF-1α-mediaged ET-2 expression may be on of the important mechanisms regulating PCOS formation in mammalian ovaries in vivo. Keywords: HIF-1α; ET-2; HIF prolyl hyodroxylase acitvity; polycystic ovary syndrome

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