Disparities in PCOS – Research Survey
Disparities in PCOS Awareness, Diagnosis, and Management Among Women of Diverse Racial and Ethnic Backgrounds
Shreya Anand
Green Hope High School, 2500 Carpenter Upchurch Rd, Cary, NC 27519
ABSTRACT
Polycystic ovary syndrome (PCOS) is a hormonal disorder affecting women of reproductive age. While diagnosis requires specific criteria, many women experience symptoms suggestive of PCOS without a formal diagnosis. This study aimed to characterize the experiences of women with PCOS symptoms through a survey analysis across different racial and ethnic groups.
Study Objective: To investigate the prevalence of androgenic and metabolic phenotypes among women with polycystic ovary syndrome (PCOS) across different racial and ethnic groups.
Methods: A cross-sectional study was conducted on women aged 15-55 years diagnosed with PCOS according to the modified Rotterdam criteria. Participants self-reported their race and ethnicity, and underwent assessments of androgenic and metabolic parameters.
Results: The survey revealed significant disparities in the awareness, diagnosis, and management of hormonal imbalances, particularly PCOS, across racial and ethnic groups. Asian women had lower rates of diagnosis, while Hispanic/Latinx women reported higher rates of sleep disturbances and mood disorders. Additionally, there were differences in the prevalence of skin and hair concerns among different groups.
Conclusion: Our findings highlight significant disparities in the awareness, diagnosis, and management of hormonal imbalances, particularly PCOS, across racial and ethnic groups. These disparities underscore the need for improved access to healthcare, culturally sensitive education, and targeted interventions to address the unique needs of women from diverse backgrounds. By addressing these disparities, we can promote better health outcomes for women with hormonal imbalances.
INTRODUCTION
Polycystic ovary syndrome (PCOS) is a common endocrine disorder affecting approximately 1 in 10 women of childbearing age. While the exact cause of PCOS remains unclear, it is believed to involve a complex interplay of genetic, hormonal, and environmental factors. Characterized by menstrual irregularities, hyperandrogenism, and polycystic ovaries, PCOS has a significant impact on women’s physical and mental health. Many women experience symptoms suggestive of PCOS, such as irregular periods, excess hair growth, acne, and weight gain, without receiving a formal diagnosis. Despite its global prevalence, PCOS is often underdiagnosed or misdiagnosed and many women remain unaware of the condition or do not seek appropriate medical attention. Many women are unaware of the connection between hormonal imbalances and common symptoms like weight fluctuations, mood swings, and irregular periods, leading to delayed diagnosis and potentially inappropriate treatment. This delay in diagnosis can lead to significant health consequences, including infertility, type 2 diabetes, and cardiovascular disease. Moreover, the National Institutes of Health (NIH) emphasizes the role of insulin resistance, a key component of PCOS, in contributing to obesity and cardiovascular diseases.
Previous studies have investigated the prevalence and impact of PCOS in various populations. However, there is a lack of comprehensive research exploring the experiences of women with PCOS symptoms, particularly in diverse racial and ethnic groups. Understanding these experiences is crucial for improving healthcare delivery and addressing the unique needs of women with PCOS. Moreover, studies underscore PCOS manifests differently across various ethnic groups and how cultural beliefs and practices can influence the recognition and management of hormonal imbalances. Factors such as genetic predispositions, insulin resistance, and environmental influences contribute to the development and presentation of PCOS symptoms. Studies indicate that minority women, especially Black and Hispanic women, face greater barriers to healthcare access, increasing their risk of underdiagnosis for conditions like PCOS and thyroid disorders. Additionally, the disparities in symptom presentation and diagnosis rates emphasize the importance of targeted educational initiatives to improve awareness and promote early detection. This highlights the need for personalized approaches in diagnosing and treating hormonal imbalances.
This study aims to characterize the experiences of women with PCOS symptoms through a survey analysis. By examining factors such as menstrual regularity, birth control use, weight changes, mental health, skin and hair concerns, and reproductive and metabolic health, we seek to identify common challenges faced by this population. Additionally, we aim to explore potential racial and ethnic disparities in the prevalence and impact of PCOS symptoms. The findings of this study will contribute to a better understanding of the lived experiences of women with PCOS symptoms and inform the development of culturally sensitive healthcare interventions. By addressing the unique needs of this population, we can improve their overall quality of life and reduce the burden of PCOS.
HYPOTHESIS
It is hypothesized that a significant number of women, particularly those from marginalized groups, will be unaware of their hormonal imbalances despite experiencing common symptoms like irregular periods, mood swings, and weight changes. Many women may attribute these symptoms to lifestyle factors rather than recognizing them as signs of an underlying hormonal condition. Consequently, the survey is expected to reveal gaps in both awareness and diagnosis, particularly among ethnic groups with disparities in healthcare access and education. These disparities will likely contribute to varying levels of understanding regarding hormonal health and its management.
METHODOLOGY
Study Design
We employed an online survey to evaluate women’s experience and knowledge of hormonal imbalances. All participants provided informed online consent prior to survey participation. The survey was disseminated through various social media platforms and online women’s health forums, such as Facebook groups, Instagram, and specialized health communities.
Participants
Women aged 15-55 who met the modified Rotterdam criteria for PCOS, based on self-reported symptoms in the online survey, were included. Participants came from White, Black American, Hispanic/Latinx, and Asian backgrounds. The survey questions were designed to comprehensively assess a broad spectrum of symptoms and experiences associated with hormonal imbalances. We collected data on demographics, menstrual cycles, birth control use, weight changes, mood and sleep issues, skin and hair concerns, and reproductive and metabolic health. Participants answered “yes” or “no” to each symptom and provided more details when asked. We used descriptive statistics to analyze the data.
Racial and Ethnic Groups
Participants identified themselves as Black American, White, Asian, or Hispanic/Latinx. For clarity, we excluded those who identified as mixed race such as Asian British, East Indian, Mixed Pacific Islander/White, Portuguese Canadian, Fijian of Indian descent (Pacific Islander), or Native American/Alaska Native due to small sample sizes.
Data Analysis
We examined the survey responses to find patterns and differences among various demographic groups. To ensure the survey’s quality, we took steps like testing questions beforehand and including diverse participants to capture a wide range of experiences. This approach aims to improve our understanding of how different racial and ethnic groups perceive and manage hormonal imbalances.
RESULTS
The survey results demonstrate significant disparities in the awareness and diagnosis of hormonal imbalances, particularly PCOS, across racial and ethnic groups. The racial/ethnic breakdown was 75% White, 5% Black American, 5% Hispanic/Latinx, and 23% Asian.
Among White women and Hispanic/Latinx, 90.7% and 80% respectively reported having PCOS, compared to only 17.4% of Asian women and 40% of Black American women (Figure 1A). Additionally, diabetes or insulin resistance rates varied significantly, with higher rates among White and Black American women. Diabetes or insulin resistance was less prevalent, with the highest rate among Black American participants (60% Black American) and White participants (49.3%). A least prevalence (4.3%) was reported among Asian participants (Figure 1B). This suggests possible underdiagnosis or lack of awareness in these minority groups.
We saw similar trends for mood swings, depression and anxiety with White women reporting higher rates (81.3%) than Black (60%) or Asian women (39.1%) participants (Figure 2).
The survey results show that Asian women have the highest percentage (78.3%) of experiencing frequent regular periods, followed by White (24%), Black American (20%), and Hispanic/Latinx (20%) women (Figure 3).
Among all participants, 24% of women reported using birth control. The majority of women from White (29% White]) background reported currently using a birth control compared to a low percentage of Asian women (8.7%). Only a moderate percentage (%20) of Black American and Hispanic/Latinx participants reported using a birth control (Figure 4).
Majority of Hispanic/Latinx women (100%) and White women (81%) reported mood swings, depression, or anxiety, as compared to only 60% of Black American women. However, fewer Hispanic/Latinx women were diagnosed with thyroid disorders compared to White or Black American women, indicating a possible diagnosis gap despite symptoms (Figure 5A and 5B).
A significant proportion of women across all racial/ethnic groups reported experiencing recent weight changes (gain or loss), with the highest prevalence among Hispanic/Latinx participants (80% Hispanic/Latinx) (Figure 6).
Sleep disturbances, such as difficulty falling or staying asleep, were also common across all groups, but again, Hispanic/Latinx women had the highest prevalence (80%). Asian and Black American women reported the lowest rates of sleep disturbances, at 35% and 40%, respectively (Figure 7).
The data also reveals differences in the use of natural supplements, with White (37.3%) and Hispanic/Latinx (40%) women more likely to use them compared to Asian women (21.7%). This might suggest varying awareness of natural treatments or cultural preferences in health management (Figure 8).
Most women reported skin problems, such as acne or dryness, and hair issues, such as thinning or loss. However, there were significant differences between racial and ethnic groups. White women reported these issues most frequently (77%), followed by Hispanic/Latinx women (60%), while Black American women reported them less often (40%). Hair loss or thinning was more common among White and Hispanic/Latinx women (63% and 60%, respectively) compared to Black American and Asian women (40% and 47%) (Figure 9).
Among all surveyed women with PCOS, we observed an interesting age-related pattern in fatigue, hot flashes,, headaches, stress related responses as seen below Figure 10.
These findings support the hypothesis that a significant number of women, especially from minority groups, remain unaware of their hormonal imbalances. The disparities in symptom reporting and diagnosis across racial groups highlight the influence of cultural, socioeconomic, and healthcare access factors on the awareness and management of these conditions.
DISCUSSION
The results of our survey underscore significant disparities in the awareness, diagnosis, and management of hormonal imbalances, particularly polycystic ovary syndrome (PCOS), across racial and ethnic groups. These disparities highlight the need for improved access to healthcare, culturally sensitive education, and targeted interventions to address the unique needs of women from diverse backgrounds.
Many women live with untreated or undiagnosed symptoms, significantly impacting their quality of life. Symptoms like weight gain, mood swings, hair loss, and irregular periods are often dismissed as stress-related or lifestyle factors, especially in cultures where reproductive and hormonal health are stigmatized. This lack of awareness, coupled with systemic barriers to healthcare, can lead to delayed diagnosis and treatment, increasing the risk of long-term complications.
Our findings demonstrate a substantial gap in awareness and diagnosis of PCOS, particularly among minority groups. Asian women had significantly lower rates of PCOS diagnosis compared to White and Hispanic/Latinx women, suggesting underdiagnosis or lack of awareness. We could hypothesize that Asian women may have a lower genetic predisposition or different metabolic factors that contribute to PCOS. However, this is just one possible interpretation, and other factors could also be at play. The sample size for Asian women might be smaller, potentially limiting the generalizability of the findings. These disparities may be influenced by cultural factors, language barriers, and limited access to healthcare.
The survey revealed differences in the reporting of symptoms associated with hormonal imbalances, such as mood swings, depression, anxiety, and sleep disturbances. Hispanic/Latinx women reported higher rates of sleep disturbances and mood disorders, while Asian women reported lower rates of these symptoms. These variations may be attributed to cultural factors, differences in symptom presentation, or varying levels of stress and social support.
The data on birth control use and natural supplement usage highlights disparities in healthcare access and preferences. Asian women had lower rates of birth control use, potentially indicating barriers to accessing reproductive healthcare. The higher rates of natural supplement use among White and Hispanic/Latinx women may reflect cultural preferences or a desire for alternative approaches to health management.
The survey also revealed differences in the prevalence of skin and hair concerns across racial and ethnic groups. White women reported higher rates of skin and hair issues, while Black American women reported lower rates. These disparities may be influenced by genetic factors, cultural beauty standards, and access to skincare and hair care products.
In countries with limited healthcare access, women are even less likely to receive appropriate medical care or hormonal screenings. Healthcare infrastructure, socioeconomic status, and cultural beliefs further contribute to the underdiagnosis of hormonal disorders. In many communities, these issues are not considered medical priorities, leading to women delaying seeking medical help until symptoms become severe. The survey results mirror this global underrecognition, as women from minority groups were less likely to be diagnosed with PCOS or related disorders despite reporting similar symptoms.
To address this global issue, education and awareness campaigns are crucial. These campaigns should focus on helping women recognize the symptoms of hormonal imbalances and encourage early treatment. Additionally, healthcare providers need to improve their diagnostic approaches by regularly screening for hormonal disorders, especially among women with symptoms like irregular periods, weight fluctuations, and mood disturbances. In countries with limited healthcare access, mobile health units and telemedicine should be optimized to reach women who may otherwise remain undiagnosed.
Treatment options should also be made more widely known. While lifestyle changes can help manage some symptoms, many women may benefit from hormonal therapies, supplements, or medication. Alternative and natural supplements are also becoming popular for managing hormonal health, as evidenced by the survey. Women should be encouraged to work closely with healthcare professionals to develop personalized treatment plans.
LIMITATIONS
This study is limited by its self-reported nature and lack of clinical diagnosis and comprehensive statistical analyses for PCOS. Additionally, the sample size may not be generalizable to the entire population with PCOS symptoms.
CONCLUSION
This survey provides valuable insights into the prevalence of menstrual irregularities, weight changes, mental health concerns, sleep disturbances, and skin and hair problems among this population. Racial/ethnic disparities were observed in some areas, suggesting potential healthcare access or cultural influences.
While the data suggests a potential difference in PCOS prevalence between Asian and White women, more research is needed to fully understand the underlying reasons. Factors such as genetics, lifestyle, and cultural influences may play a role. It’s essential to consider these factors when interpreting the findings and developing targeted interventions for PCOS prevention and management. Further research is needed to explore the underlying mechanisms of these symptoms and develop culturally sensitive management strategies.
In conclusion, our study provides valuable insights into the disparities in hormonal imbalance awareness, diagnosis, and management across racial and ethnic groups. By addressing these disparities through improved access to healthcare, culturally sensitive education, and targeted interventions, we can promote better health outcomes for women from all backgrounds.
IMPLICATIONS AND FUTURE DIRECTIONS
Overall, addressing the global burden of hormonal imbalances requires a multi-faceted approach, including increasing access to affordable healthcare, reducing stigma around women’s health issues, and creating a more open educational environment regarding hormonal imbalances. By addressing these issues early, we can prevent more severe health problems and empower women to lead healthier and more fulfilling lives.
Our findings emphasize the need for culturally sensitive education and awareness campaigns to address the disparities in hormonal imbalance awareness and diagnosis. Healthcare providers should be trained to recognize the diverse presentation of symptoms and to provide culturally appropriate care for women from different backgrounds. Future research should explore the underlying factors contributing to these disparities, including socioeconomic status, access to healthcare, cultural beliefs, and genetic differences. Targeted interventions, such as culturally tailored educational programs and community-based support groups, may be effective in improving the health outcomes of women with hormonal imbalances, particularly those from minority groups.
