The term gestational trophoblastic disease (GTD) describes a group of placental neoplasms, including both benign forms, partial and complete hydatidiform moles, and malignant forms, collectively referred to as gestational trophoblastic neoplasia (GTN). The latter includes invasive moles, choriocarcinoma, placental site trophoblastic tumors, and epithelioid trophoblastic tumors [1]. Partial and complete moles are nonviable pregnancies that progress to GTN in around 1%-5% and 20% of cases, respectively [1-5]. Patients with partial and complete moles have a particularly unfortunate situation: the happiness of a desired pregnancy is suddenly replaced with mourning a pregnancy loss complicated with the additional burden of a potentially life-threatening diagnosis [6]. While most cases of GTN follow molar pregnancies, GTN can occur after any gestational event, including ectopic and term pregnancies, sometimes delaying diagnosis and worsening prognosis [1].

In Brazil, 1 case of GTD occurs in every 200-400 pregnancies [7]. In this continent-spanning country, with 208 million inhabitants [8] distributed over a large territorial area of 8,516,000 km², the treatment of women with GTD in reference centers is a challenge, especially outside state capital cities [9]. In 2013, the International Society for the Study of Trophoblastic Disease supported the development of the Brazilian Association of Gestational Trophoblastic Disease (Brazilian Association of GTD) [10]. Since then, this society has been working with health professionals all over Brazil to improve GTD treatment. Currently, there are 38 Brazilian gestational trophoblastic disease reference centers (BRC), with more than 25,000 cases of GTD treated to date and about 1500 new cases seen each year. This medical care is linked to the Brazilian public health care system and is free for patients. This has led to major advances both in the care of patients with GTD and in research on this disease in Brazil [10]. Earlier diagnosis of molar pregnancy and close postmolar follow-up using human chorionic gonadotropin (hCG) monitoring to promptly recognize GTN [11] and initiate appropriate treatment with chemotherapy in reference centers has led to dramatic decreases in maternal morbidity and mortality associated with GTD [9,12,13].

To supplement the centralized coordination of care and collaboration among BRC, the Brazilian Association of GTD created an online community on Facebook (Facebook group of the Brazilian Association of GTD; FBGTD) in 2013. This online community supports patients, patients’ relatives, and health care professionals by providing advice about GTD and helping direct patients to treatment at BRC. While there are few well-documented health care initiatives on Facebook, several Web-based communities focused on disseminating scientific data and combating false information have been shown to improve medical knowledge and the quality of patient care [14,15]. Facebook readily facilitates the exchange of information and experiences among patients, especially those with rare diseases. This exchange creates valuable relationships that support and empower patients in a way that was impossible before the social media era [16].

Careful observation and study of these Web-based relationships, called netnography, can reveal fears, feelings of unsafety, and unusual behaviors among Facebook users that may not be noted via other methods, such as a questionnaire [17]. A netnographic study has the potential to offer information about patients that may be useful to improve their care. The aim of this study was to document the netnography of Brazilian patients participating on FBGTD and evaluate how the experiences discussed or reported by patients differed depending on whether they received care within or outside of a BRC.

Of the 807 GTD patients who were members of the FBGTD and, therefore, eligible to participate in this study, 367 answered the questionnaire. An additional 11 non-Brazilian women were excluded, leaving 44.1% (356/807) participants who comprised the final population of Brazilian GTD patients, as shown in Figure 1. In the first phase of questionnaire responses, in which no direct encouragement to patients to respond was made, 52.2% (186/356) subjects participated in the study. After sending an SMS text message inviting participants to the study, 23% (82/356) new patients responded to the questionnaire. Finally, an additional 24.7% (88/356) only participated in the study after the request of one of the FBGTD moderators.

Demographic characteristics of patients in the FBGTD showed no differences between 176 RCP and 180 NRCP as shown in Table 1. Notably, the proportion of women living in a city with a reference center was not significantly different between patients treated (79/176) and not treated (70/180; P=.25) at a BRC.

When analyzing the socioeconomic characteristics of the participating members of FBGTD (Table 2), NRCP exhibited higher education levels than RCP (postgraduate education: 53/180 vs 32/176; P=.009). There were no differences in complaints about work problems between the groups; furthermore, there were no differences in the number of employed women between RCP (115/176) and NRCP (117/180; P=.94).

Most of the patients who answered the questionnaire were in remission from GTD (210/356 after spontaneous remission and 67/356 after chemotherapy; Table 3). RCP felt safer and more confident at the time of diagnosis of GTD (84/176) than NRCP (53/180; P=.001). Concordantly, NRCP reported more frequently (55/180) than RCP (32/176; P=.007) that what most negatively affected them at the time of diagnosis was the fact that doctors did not explain GTD. RCP more frequently received all treatment from the Brazilian public health system than NRCP (106/176 vs 60/180; P<.001). Also, there was more pronounced migration during therapy from the private health system to the Brazilian public health system among RCP (29/176) than among NRCP (16/180; P<.001). Although RCP and NRCP both reported similar sexual activity (P=.37), notably less than half of the NRCP (86/180) used a hormonal contraceptive method compared with the majority of RCP (121/176; P<.001).

Table 4 presents the netnography characteristics of participating members of FBGTD. Of all, 89% (317/356) patients accessed the internet preferentially from home using mobile phones. Facebook and WhatsApp were the social networks most frequently used by patients (327/356, 92%). Instagram use was more frequent among NRCP (114/180) than among RCP (92/176, P=.03). Facebook groups of interest among these patients were those that provided answers to questions about the disease and treatment options (246/356, 69%) and that provided exchange of experiences among people who have a problem or a similar interest (274/356, 77%).

NRCP found FBGTD through Web searches (139/180 vs 85/176, P<.001; Table 5) while RCP were more likely to be referred to FBGTD through health assistants (64/176 vs 32/180, P<.001; Table 5). NRCP were more likely to be on FBGTD longer than 6 months (118/180 vs 95/176, P=.03; Table 5) and to raise more questions about GTD treatment (107/180) than RCP (84/176, P=.01; Table 5).

This netnographic study of GTD patients in the FBGTD indicates that GTD patients find a moderated online community to be an important and trustworthy source of peer support and medical advice. Patients drew psychoaffective support from the online interactions and an improved understanding of the disease and its management. These benefits were most evident among NRCP.

GTD is a rare disease, and outcomes of GTD treatment have improved worldwide with the establishment of reference centers, with exceptional rates of cure and of the ability to preserve fertility [19]. Further distance between the residence of the patients with GTD and the referral center worsens the prognosis of this disease, likely related to delay in the diagnosis, and is associated with more advanced stages of GTN at diagnosis and higher rates of incomplete follow-up [20]. The internet can mitigate these effects, acting as a medium for the diffusion of knowledge about malignant disease [21], including GTD, not only among physicians but also among patients, helping them find specialized services, promoting a rich exchange of information, and, in selected cases, promoting personalized guidance through electronic evaluations using private emails [22].

In Brazil there are 236 million mobile phones in use (113.8/100 inhabitants) [23], which could explain mobile phones as the most common way to access the FBGTD. With the increase in mobile phone ownership, health care providers have become interested in integrating the use of mobile phones in the care of chronic conditions such as HIV, diabetes, hypertension, and asthma [24-28]. Mobile phones are portable, capable of receiving and transmitting data, and “always on.” They also offer health care providers the unique ability to connect with hard-to-reach populations that might otherwise not have access to health care services [29]. Our data showing that GTD patients most commonly have accessed the FBGTD via mobile phone may represent an opportunity to develop apps, monitored by specialized physicians, to facilitate and improve hCG follow-up. Such an innovation would enable the GTD patients to be more active agents in managing their own health care.

Facebook is the most widely used social media platform and has been recognized as a tool to support patients [30,31] and pregnant women [32]. Some medical societies have issued recommendations on how to appropriately use Facebook and other social media. These recommendations, aimed at physicians and patients, highlight how to preserve confidentiality and to avoid medicolegal complications [33]. The Brazilian FBGTD page was created 5 years ago by Drs MV and AB, directors of Brazilian Association of GTD, observing these recommendations. Since then, they and other Brazilian Association of GTD physicians have posted advice for individual patients (answering individual specific questions) as well as for groups of patients. It is important to emphasize that they encourage patients to have a face-to-face appointment at the closest BRC, advising that the online recommendations should not replace a thorough personal consult (medical history, physical exam, images, and laboratory evaluation). However, some patients reside in regions distant from a BRC, and FBGTD is the only means through which such patients can access an expert in GTD.

Of all, 98% (349/354) patients declared they felt safe reading the posts from the FBGTD physicians. Web-based interactions used simple, understandable, warm, and empathetic language and facilitated an effective doctor-patient relationship. This could be one of the reasons that a quarter of the patients answered the survey only after Dr AB initiated an invitation to participate.

Based on the success of the FBGTD, similar efforts have been launched for other diseases. For example, in Porto Alegre in Brazil, a closed Facebook group similar to FBGTD was created in 2018 as an education platform to involve adolescent renal transplant patients [34]. This new group facilitates the expression of feelings and contributes to increased self-esteem, reduced anxiety, and increased adherence to the treatment plan.

It should be noted that women with GTD and higher educational level are more likely to have follow-up outside a BRC. In general, these women have greater resources and do not undergo treatment under the Brazilian public health system. However, we observed that 64% (29/45) of these women, who initially sought private health assistance, migrated to the Brazilian public health system to be seen in a BRC, showing the quality of these specialized services [10,12]. In addition, patients treated outside a BRC are more likely to express doubts about GTD and less able to interpret the information provided by their doctors. This may be related to fundamental gaps in GTD understanding on the part of gynecologists and oncologists not associated with a referral center [22]. Moreover, at a BRC, care is provided exclusively to patients with GTD and, therefore, the physicians can spend more time discussing the disease and its proper follow-up. This is illustrated in the significant difference in the adoption of effective hormonal contraception in the postmolar follow-up, fundamental to providing reliable hormonal surveillance [35,36] and much more evident among the women followed at a BRC.

A striking netnography difference in this study showed that patients with GTD treated outside a BRC accessed the FBGTD for a longer duration than those who were treated a BRC. This is most likely because these women had less understanding of the disease and had not had the opportunity to get their concerns addressed by a doctor specializing in GTD.

One of the limitations of this study is the nature of nonprobabilistic sampling, which can compromise the quantitative data analysis. Consequently, our results may not be easily extrapolated to other GTD populations. Another issue that should be emphasized is that all responses were provided by the patients, and there is no way to verify the accuracy of the information provided. In addition, there may be differences between women who use social media or choose to participate in social media questionnaires and those who do not. The issues of patient response and patient self-selection could produce both recall bias and selection bias. On the other hand, we gained important insights about the Web-based doctor-patient relationship among patients with GTD. The use of an understandable and warm language, even without a face-to-face meeting between a doctor and a patient, can establish a safe and confident doctor-patient relationship. This Web-based relationship may be important in strengthening the strategies related to the education of GTD patients on a large scale, which may be particularly important in countries with a large territorial area, leading to difficulties in obtaining quality health care.

In this new Web-based social media era, physicians and other health professionals should understand that patients asking questions in an internet environment are trying to make sense of their treatment. A Facebook page headed by experienced and knowledgeable professionals, as the Brazilian FBGTD, can play an important role to correct misinformation [15,32] and be a valuable tool for medical learning [37] and supporting patients.