JMIR Publications

ABSTRACT

Background:

Polycystic ovary syndrome (PCOS) is a heterogeneous condition that affects 4% to 21% of people with ovaries. Inaccessibility or dissatisfaction with clinical treatment for PCOS has led to some individuals with the condition discussing their experiences in specialised online forums.

Objective:

This study explores the feasibility of using such online forums for clinical research purposes by gathering and analysing laboratory test results posted in an active PCOS forum.

Methods:

These self-reported forum-posted laboratory test results were compared with values in the published literature to assess whether results were concordant with researcher published values for PCOS cohorts. Ten papers were chosen to represent published PCOS literature, with selection criteria including Rotterdam diagnosis of PCOS participants, a publication date within the last 20 years, and at least 50 PCOS participants.

Results:

Overall, the general trends observed in the laboratory test results from the PCOS online forum were consistent with clinically reported PCOS. A number of results, such as FSH (follicle stimulating hormone), fasting insulin and AMH (anti-Mullerian hormone), were concordant with published PCOS patient values. The high consistency of these results among the literature, and when compared to the subreddit, suggests that FSH, fasting insulin and AMH are more consistent across PCOS phenotypes than other test results. Some results, such as testosterone, SHBG (sex hormone binding globulin) and HOMA-IR (an index for assessing insulin resistance), were between that of PCOS literature values and normal values, as defined by clinical testing limits. Interestingly, other results including DHEA-S (dehydroepiandrosterone-sulphate), LH (luteinizing hormone) and fasting glucose appeared to be slightly more dysregulated than reported in literature.

Conclusions:

The differences between the forum-posted results and those published in the literature may be due to the selection process in clinical studies and the possibility that the forum disproportionally describes PCOS phenotypes that are less likely to be alleviated with medical intervention. However, the degree of concordance in most laboratory test values implied that the PCOS online forum participants were representative of research-identified PCOS cohorts.