PDF(Pubmed)
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 specialized web-based forums.
OBJECTIVE: This study explores the feasibility of using such web-based forums for clinical research purposes by gathering and analyzing laboratory test results posted in an active PCOS forum, specifically the PCOS subreddit hosted on Reddit.
METHODS: We gathered around 45,000 posts from the PCOS subreddit. A random subset of 5000 posts was manually read, and the presence of laboratory test results was labeled. These labeled posts were used to train a machine learning model to identify which of the remaining posts contained laboratory results. The laboratory results were extracted manually from the identified posts. These self-reported laboratory test results were compared with values in the published literature to assess whether the results were concordant with researcher-published values for PCOS cohorts. A total of 10 papers were chosen to represent published PCOS literature, with selection criteria including the Rotterdam diagnostic criteria for PCOS, a publication date within the last 20 years, and at least 50 participants with PCOS.
RESULTS: Overall, the general trends observed in the laboratory test results from the PCOS web-based forum were consistent with clinically reported PCOS. A number of results, such as follicle stimulating hormone, fasting insulin, and anti-Mullerian hormone, were concordant with published values for patients with PCOS. The high consistency of these results among the literature and when compared to the subreddit suggests that follicle stimulating hormone, fasting insulin, and anti-Mullerian hormone are more consistent across PCOS phenotypes than other test results. Some results, such as testosterone, sex hormone-binding globulin, and homeostasis model assessment-estimated insulin resistance index, were between those of PCOS literature values and normal values, as defined by clinical testing limits. Interestingly, other results, including dehydroepiandrosterone sulfate, luteinizing hormone, and fasting glucose, appeared to be slightly more dysregulated than those reported in the 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 web-based forum participants were representative of research-identified PCOS cohorts. This validation of the PCOS subreddit grants the possibility for more research into the contents of the subreddit and the idea of undertaking similar research using the contents of other medical internet forums.
OBJECTIVE: This study explores the feasibility of using such web-based forums for clinical research purposes by gathering and analyzing laboratory test results posted in an active PCOS forum, specifically the PCOS subreddit hosted on Reddit.
METHODS: We gathered around 45,000 posts from the PCOS subreddit. A random subset of 5000 posts was manually read, and the presence of laboratory test results was labeled. These labeled posts were used to train a machine learning model to identify which of the remaining posts contained laboratory results. The laboratory results were extracted manually from the identified posts. These self-reported laboratory test results were compared with values in the published literature to assess whether the results were concordant with researcher-published values for PCOS cohorts. A total of 10 papers were chosen to represent published PCOS literature, with selection criteria including the Rotterdam diagnostic criteria for PCOS, a publication date within the last 20 years, and at least 50 participants with PCOS.
RESULTS: Overall, the general trends observed in the laboratory test results from the PCOS web-based forum were consistent with clinically reported PCOS. A number of results, such as follicle stimulating hormone, fasting insulin, and anti-Mullerian hormone, were concordant with published values for patients with PCOS. The high consistency of these results among the literature and when compared to the subreddit suggests that follicle stimulating hormone, fasting insulin, and anti-Mullerian hormone are more consistent across PCOS phenotypes than other test results. Some results, such as testosterone, sex hormone-binding globulin, and homeostasis model assessment-estimated insulin resistance index, were between those of PCOS literature values and normal values, as defined by clinical testing limits. Interestingly, other results, including dehydroepiandrosterone sulfate, luteinizing hormone, and fasting glucose, appeared to be slightly more dysregulated than those reported in the 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 web-based forum participants were representative of research-identified PCOS cohorts. This validation of the PCOS subreddit grants the possibility for more research into the contents of the subreddit and the idea of undertaking similar research using the contents of other medical internet forums.
摘要：
背景：多囊卵巢综合征（PCOS）是一种异质性疾病，影响4％至21％的卵巢患者。对PCOS的临床治疗的难以接近或不满意导致一些患有这种情况的人在专门的基于网络的论坛上讨论他们的经验。
目的：本研究通过收集和分析在活跃的PCOS论坛上发布的实验室测试结果，探索将此类基于网络的论坛用于临床研究目的的可行性。特别是在Reddit上托管的PCOSsubreddit。
方法：我们从PCOSsubreddit收集了大约45,000个帖子。手动读取了5000个帖子的随机子集，和实验室测试结果的存在被标记。这些标记的帖子用于训练机器学习模型，以识别其余帖子中的哪些包含实验室结果。实验室结果是从确定的帖子中手动提取的。将这些自我报告的实验室测试结果与已发表文献中的值进行比较，以评估结果是否与研究人员发表的PCOS队列的值一致。总共选择了10篇论文来代表已发表的PCOS文献，选择标准包括鹿特丹的PCOS诊断标准，过去20年内的出版日期，和至少50名PCOS参与者。
结果：总体而言，在PCOS网络论坛的实验室检测结果中观察到的总体趋势与临床报告的PCOS一致.一些结果,如促卵泡激素，空腹胰岛素，和抗苗勒管激素,与已发表的PCOS患者的价值一致。这些结果在文献中以及与subreddit相比的高度一致性表明，卵泡刺激素，空腹胰岛素，和抗苗勒管激素在PCOS表型中比其他测试结果更一致。一些结果,比如睾丸激素，性激素结合球蛋白，和稳态模型评估-估计的胰岛素抵抗指数，介于PCOS文献值和正常值之间，由临床测试限值定义。有趣的是,其他结果,包括硫酸脱氢表雄酮,黄体生成素,和空腹血糖，似乎比文献中报道的稍微失调。
结论：论坛发表的结果与文献中发表的结果之间的差异可能是由于临床研究中的选择过程以及论坛不成比例地描述了PCOS表型的可能性，这些表型不太可能通过医疗干预得到缓解。然而,大多数实验室检测值的一致性程度意味着PCOS网络论坛参与者是研究确定的PCOS队列的代表.PCOSsubreddit的这种验证提供了对subreddit的内容进行更多研究的可能性，以及使用其他医学互联网论坛的内容进行类似研究的想法。
目的：本研究通过收集和分析在活跃的PCOS论坛上发布的实验室测试结果，探索将此类基于网络的论坛用于临床研究目的的可行性。特别是在Reddit上托管的PCOSsubreddit。
方法：我们从PCOSsubreddit收集了大约45,000个帖子。手动读取了5000个帖子的随机子集，和实验室测试结果的存在被标记。这些标记的帖子用于训练机器学习模型，以识别其余帖子中的哪些包含实验室结果。实验室结果是从确定的帖子中手动提取的。将这些自我报告的实验室测试结果与已发表文献中的值进行比较，以评估结果是否与研究人员发表的PCOS队列的值一致。总共选择了10篇论文来代表已发表的PCOS文献，选择标准包括鹿特丹的PCOS诊断标准，过去20年内的出版日期，和至少50名PCOS参与者。
结果：总体而言，在PCOS网络论坛的实验室检测结果中观察到的总体趋势与临床报告的PCOS一致.一些结果,如促卵泡激素，空腹胰岛素，和抗苗勒管激素,与已发表的PCOS患者的价值一致。这些结果在文献中以及与subreddit相比的高度一致性表明，卵泡刺激素，空腹胰岛素，和抗苗勒管激素在PCOS表型中比其他测试结果更一致。一些结果,比如睾丸激素，性激素结合球蛋白，和稳态模型评估-估计的胰岛素抵抗指数，介于PCOS文献值和正常值之间，由临床测试限值定义。有趣的是,其他结果,包括硫酸脱氢表雄酮,黄体生成素,和空腹血糖，似乎比文献中报道的稍微失调。
结论：论坛发表的结果与文献中发表的结果之间的差异可能是由于临床研究中的选择过程以及论坛不成比例地描述了PCOS表型的可能性，这些表型不太可能通过医疗干预得到缓解。然而,大多数实验室检测值的一致性程度意味着PCOS网络论坛参与者是研究确定的PCOS队列的代表.PCOSsubreddit的这种验证提供了对subreddit的内容进行更多研究的可能性，以及使用其他医学互联网论坛的内容进行类似研究的想法。
