Polycystic ovary syndrome (PCOS) describes a convergence of chronic multisystem endocrine derangements, including irregular menses, hirsutism, obesity, hyperlipidemia, androgenization, large and polycystic-appearing ovaries, insulin resistance and infertility [5
]. Although PCOS is the most common hormonal disorder among reproductive age women [1
], is the leading cause for anovulatory/oligoovulatory infertility [6
], and has the potential for serious long-term health effects [7
], paradoxically the condition is often underdiagnosed. The absence of uniform diagnostic criteria for PCOS [11
] has probably contributed to its low clinical diagnosis rate, although organized media campaigns [12
] aimed to increase PCOS awareness (both among physicians and patients) should result in more women seeking medical evaluation specifically because PCOS is suspected. As these laudable education efforts gain momentum, however, the current state of patient comfort with their "level of awareness" regarding PCOS, where their facts come from, and how they feel about their diagnosis are imprecisely characterized. If the objective of heightened public interest in PCOS is indeed achieved through wide public-service announcements or other structured media exposure, then a contemporary (baseline) measurement of patient perception and awareness of PCOS as reported here would be helpful.
Although we could not verify the self-reported cognitive claims made by study participants, more than half of respondents considered themselves to be "very aware" of PCOS. These data confirm an intuitive association between physicians and PCOS patient teaching through office-based patient education and counseling. That most women would turn first to their doctor for further guidance regarding PCOS is not a new finding, although these data indicate that the messages conveyed by doctors appears to be poorly received by patients.
Specifically, the strongly negative emotions study participant identified with PCOS management by physicians demonstrated a profound gap between patient expectations and actual (prescribed) therapy. Indeed, our study population appeared unsatisfied with oral contraceptives or clomiphene citrate when prescribed as treatment for PCOS. In this study we were careful not to call specific attention to any substitute therapy, but rather to describe patient acceptance of these two existing treatments. This investigation detected a strong receptiveness among PCOS women regarding any safe and effective alternative to PCOS management. "Frustration" and "anxiety" associated with PCOS was observed across all age groups in this sample, perhaps suggesting either that a PCOS diagnosis was delayed in some older patients, or that negative emotions persist in some PCOS patients for many years after they are informed of their condition.
As with any questionnaire-based research, there were some important limitations with our study that should be acknowledged. Our research method relied on an unscreened but motivated audience and a functional computer interface, with the result that PCOS patients lacking the means and/or ability to access the study questionnaire were excluded from our sample. The fact that study participation depended on internet use likely explains the high self-reported familiarity and knowledge level for PCOS in this group. While PCOS preferentially affects women of reproductive age, and patients in this age group may tend to have a greater fluency with computer-based research tools, a full exploration of this demographic association was beyond the scope of our investigation. Conversely, the possibility also existed that some of our respondents had not been properly diagnosed with PCOS and therefore inappropriately inflated the sample. We regarded these two balanced sources of selection bias to be of essentially equivalent magnitude and therefore mutually negating. Whether or not the observations reported by computer-assisted questionnaire are representative of all PCOS patients is difficult to establish, although this represents the focus of ongoing research at our institutions. It may be that results obtained exclusively from an anonymous, confidential computer-accessed questionnaire are more likely to depict extreme views not typical of those encountered clinically, yet the sample size registered here was considered sufficiently large to attenuate this effect.