Approximately 6-20% of reproductive-age females have polycystic ovarian syndrome (PCOS) depending upon the diagnostic criteria (Witchel et al., 2019). PCOS is an endocrine disorder that affects reproductive features in females, but the pathogenesis is not well understood (Barber et al., 2016). Clinical diagnosis of PCOS is most often based on the Rotterdam criteria which states that to be diagnosed with PCOS, an individual must meet two of the following criteria:
Oligomenorrhea, anovulation, and acne
Evidence of hyperandrogenism
Polycystic ovaries on ultrasonography
Oligomenorrhea is defined as the absence of menstruation for more than 45 days or less than 8 cycles per year (Kaewnin et al., 2017). Evidence of hyperandrogenism can be based on physical appearance or biochemical factors. Physical appearance criteria include male pattern baldness, a moderate to severe score on a Global Acne Grading Scale, and hirsutism or hair growth in unusual places for females (Khafagy et al., 2020). Biochemical factors include a raised FA1 or free testosterone greater than 63 ng/dL (Kamboj & Bonny, 2017). Polycystic ovaries will appear as a string of pearls on the ovaries with more follicles than a normal ovary (Witchel et al., 2019).
PCOS presents itself in the form of many different symptoms. Cystic ovaries, menstrual irregularities, weight gain, and infertility are among the most common symptoms of PCOS (Arentz et al., 2021). Symptoms associated with PCOS are distressing and increase the risk for many comorbidities. Some of these associated comorbidities are type 2 diabetes, dyslipidemia, metabolic abnormalities, endometrial carcinoma, and psychosocial dysfunction (Al-Saedy et al., 2021; Bannigida et al., 2018). Risk is also increased for developing cardiovascular disease, hypertension, depression, and eating disorders (Arentz et al., 2021; Kaewnin et al., 2017; Leon et al., 2021). There is not a cure or any known treatments for Polycystic Ovarian Syndrome primarily because the exact cause of PCOS is not fully understood. PCOS symptoms and comorbidity risk factors are best managed with individualized care from a comprehensive healthcare team (primary care physician, OB/GYN, endocrinologist, dietitian, and exercise specialist).
Although common, PCOS is often misunderstood, misdiagnosed, or goes undiagnosed until multiple symptoms and comorbidities are present. This is likely due to a lack of education, awareness, and communication of symptoms by the patient. It is also due to an underappreciation of the detriments to quality of life, as well as the risks and consequences of PCOS on the part of the healthcare provider. It was inferred that a barrier did exist for college-aged females to be aware of and diagnosed with PCOS. Potential barriers include that they may not have a family care physician, they may not have seen an OB/GYN yet, or they may be embarrassed with associated symptoms. It was unknown whether females at the university were receiving adequate treatment to manage their symptoms and how much distress their symptoms were causing them on a daily basis. It was unclear what the prevalence of PCOS is or what the current level of knowledge was regarding this disorder at a university in Utah. Therefore, the purpose of this study was to measure the prevalence of PCOS and determine the current level of knowledge of this topic among female students attending the university. The main objectives of this study were to:
estimate the proportion of female students that were aware of PCOS and specific PCOS-related symptoms;
measure the prevalence of female students attending the university that have been diagnosed with PCOS;
determine prevalence of PCOS symptoms in females who have not been diagnosed with PCOS;
determine if and how symptoms are managed/treated among female students who have been diagnosed with PCOS and perceived efficacy of symptom management; and
determine level of interest in PCOS education and information provided through campus resources.
It was hypothesized that between 6-20% of students had been diagnosed with PCOS and the prevalence of females experiencing symptoms would be higher. We also hypothesized that the majority of respondents would have interest in additional information provided through campus resources.
The university’s Institutional Review Board approved this study prior to collecting any information. Students chose to participate in the survey by scanning a QR code printed on flyers that were posted and distributed at the university. Students were also given the opportunity to participate through a link provided in an informational Canvas announcement or email, sent by faculty with whom researchers had a personal relationship. Once participants chose to access the survey, the first question contained the informed consent document. If the participant answered “Yes, I understand”, they were directed to the subsequent survey questions. All survey responses were anonymous and could not be traced back to the participants.
In order to participate in this study, participants had to be 18-years or older, a biological female, and a current student at the university. Participation was voluntary and subjects could stop at any point if they felt uncomfortable. Utmost anonymity was established to ensure privacy and promote honest responses. Participants could win a $50 Amazon gift card if they chose to enter the giveaway which directed them to a separate link to ensure all survey answers remained anonymous.
Qualtrics was used for the survey platform. The survey contained preliminary questions such as gender and age to determine which participants met inclusion criteria. The survey also contained questions that asked if participants had been clinically diagnosed with PCOS and their knowledge of specific symptoms associated with PCOS. Those clinically diagnosed with PCOS were then asked questions about the treatment methods currently used to manage symptoms and how well they believe their symptoms are managed. All participants were asked if they would find additional resources about PCOS offered by the campus health and wellness center beneficial.
Data was exported from Qualtrics and analyzed using Microsoft Excel. Responses were checked to ensure participants met the inclusion criteria and had completed the entire survey. Survey responses were excluded from the data if they were incomplete or failed to meet the inclusion criteria. Frequencies were then calculated and used to interpret the results.
A total of 380 responses (N=380) were collected and 351 participants (n=351) met the inclusion criteria and completed the entire survey. The majority of participants were between 18 and 22 years old and all participants were students at the university, a biological female, and 18 years or older. Of these, 9% (n=30) reported being clinically diagnosed with PCOS. Approximately 30% (n=100) of respondents were unaware or have never heard of PCOS, but 75% stated they would like to learn more about PCOS. All measurements of awareness of specific signs and symptoms associated with PCOS can be found in Table 1.
Individuals not diagnosed with PCOS were asked what symptoms they currently experience. Common symptoms were provided which included cystic ovaries, menstrual irregularities, infertility, excess weight gain, acne in adult life, hair loss on the crown of the head, excessive facial or body hair, and darkened skin in central areas of the body. 30% (n=106) of respondents not diagnosed with PCOS experience two or more of the symptoms.
More than half of respondents who have been clinically diagnosed with PCOS are either using birth control and/or exercise to manage their symptoms (Table 2). A full overview of what techniques respondents that have been clinically diagnosed with PCOS (n=30) are using to manage their symptoms can be found in Table 2. When asked how well managed they believe their symptoms are, 4 respondents said they felt they were managed “not well at all,” 8 said “slightly well,” 10 said “moderately well,” 6 said “very well,” and 2 said “extremely well.” When asked how much distress their symptoms cause them on a daily basis, 2 respondents answered “a great deal of distress,” 5 said “a lot,” 11 said “a moderate amount,” 10 said “a little,” and 2 said “none at all.”
The primary objective of this study was to determine the current level of knowledge of this topic among female students attending the university. Although only 28% (n=100) of respondents were unaware of the condition, the overwhelming majority of respondents were not familiar with all of the signs and symptoms of PCOS and most stated they would like to learn more. Another objective of this study was to measure the prevalence of PCOS at the university. 30% (n=106) of individuals who have not been diagnosed with PCOS experience two or more of the associated symptoms suggesting that the prevalence of PCOS is likely higher than the 9% reported in the present study. Lack of education and awareness of the signs and symptoms of PCOS may mean that many traditional college-age females will go undiagnosed. Furthermore, the majority of respondents who have been diagnosed with PCOS reported their symptoms as “managed moderately well” to “not well at all” and that their symptoms cause them a “moderate amount” to a “great deal” of distress on a daily basis. This data suggests that current methods being used are not adequately helping those with PCOS. Provision of educational resources about signs and symptoms as well as treatment options may aid in supporting individuals with PCOS to better manage symptoms and limit distress.
The hypothesis that females attending the university have limited knowledge of PCOS and between 6-20% of students have been clinically diagnosed with PCOS was supported by the data. 9% (n=30) of respondents have been clinically diagnosed with PCOS and there was enough data supporting that respondents have limited knowledge regarding PCOS. The results from this study will hopefully create opportunities for female students at the university to receive support and education about this common disorder.
We recognize that this was a self-reported survey and several assumptions and limitations are present. As with any survey, we assume that participants answered questions honestly and accurately and were able to read and understand the questions being asked. To foster honest responses, the results of this survey were anonymous and respondents were allowed to discontinue the survey if they felt uncomfortable. We also recognize that evaluation of results were susceptible to personal assumptions of the researchers and the findings from this study may not apply to other populations or campus communities.
Polycystic Ovarian Syndrome is prevalent at the university and data from the present study indicates a general lack of awareness of many common signs and symptoms. As such, there is a need for more widely available and visible educational resources within the campus community. Ideally these resources would allow students that have been diagnosed with PCOS to feel supported and encourage those with symptoms to reach out to their primary care provider. Educational resources can also help those that do not have PCOS to better support and understand the distressing symptoms others are experiencing. The results from this study suggest that knowledge of PCOS is limited. The university and likely other universities should take action to ensure females are educated about a disorder that could affect them and negatively impact their life.