Schizophrenia is a psychiatric disorder characterized by a multidimensional psychopathology that includes positive, negative and mood symptoms, as well as cognitive impairment. Additionally, it is commonly associated with impairments in social and occupational functioning (1). Schizophrenia and psychotic disorders are among the world's leading causes of disability (2). However, evidence-based psychosocial interventions, in conjunction with pharmacotherapy, can help patients achieve recovery (3, 4).

Antipsychotic medications are the first-line treatment for psychosis-related disorders and have been shown to be effective in treating associated symptoms and behaviors (5). First- and second-generation antipsychotic medications are comparable in clinical efficacy, with the exception of clozapine, which demonstrates the best results toward treatment-resistant schizophrenia (6, 7). However, they differ from one another in other characteristics such as dosing, the route of administration, the side effects and the cost (8). All these factors influence the selection of the antipsychotic drug to be used, as well as adherence to a medication regimen, ultimately affecting a medication's effectiveness. For example, weight gain, diabetes, and dyslipidemia are more often associated with second-generation antipsychotics (SGAs), while first-generation antipsychotics (FGAs) generally have a greater risk of extrapyramidal side effects (8, 9).

In patients with a poor response to medication or repeated relapses, non-adherence should be considered (10, 11). Side effects, along with a limited awareness of one's schizophrenia and the need for treatment, are frequently the primary cause of non-adherence, and thus need to be addressed (3). However, many patients hide these issues from their doctor, with the reasons for doing so poorly understood yet nevertheless significant, such as the feeling of shame in disclosing these aspects or the fear of being judged (11).

Traditional research on patients' experiences to treatment has principally relied on surveys or interviews (12–14). However, the analysis of social media posts has emerged as an important tool capable of gathering a more comprehensive understanding of those factors involved in the therapeutic process and in the experience of the disease (15, 16). It also allows for greater insights into the opinions of others apart from just the patients themselves, thereby providing additional data from a wider range of perspectives, including those patients that are reluctant to visit a medical professional (15–17). In addition, social media conversations are generated within a more casual and spontaneous environment than those that take place during a medical appointment; thus, they may be more likely to reflect true beliefs (18–20).

Furthermore, numerous studies have also demonstrated that individuals living with schizophrenia use popular social media platforms at comparable rates to the general population (21). In addition, individuals with mental illness appear to use social media to share their illness experiences or seek advice from others with similar conditions (21). However, less is known about whether people with psychosis talk about antipsychotic medication experiences over social media. Thus, our aims were to (1) investigate the frequency of online communications about antipsychotic medications among Twitter users; (2) characterize the type of users participating in these conversations; (3) determine the main thematic content of Twitter posts and the interest they generated; and (4) analyze references to specific antipsychotic medications.

In this study, we have found that Twitter users show a great interest in antipsychotic medications focused on sexual dysfunction and sedation, especially those users identifying themselves as patients. Tweets asking for or offering help and those posted by institutions obtained the highest retweet-to-tweet ratio, whereas tweets discussing cognitive complaints obtained the highest like-to-tweet ratio. Moreover, health professionals did not command a strong presence in driving Twitter conversations with regards to antipsychotics, nor did medical institutions. In addition, tweets referring to the trivialization of certain medications was frequently observed. Interestingly, paliperidone, despite being among one of the most recent drugs launched on the market, nevertheless has failed to generate much interest among Twitter users, accounting for only a small number of tweets.

Furthermore, the medical treatment of patients with chronic diseases has become an increasing challenge to society, with several factors involved in patient outcomes (28). These are the efficacy and side effects of medications, access to medical information and social considerations toward a particular disease and its treatment, all of which serve to influence patients' attitudes in regards to treatment (29, 30). Thus, identifying both patients' and the public's areas of concern about diseases and their treatment in general, along with mental health conditions in particular, is extremely relevant for improving clinical outcomes (31). Correspondingly, the analysis of social media platforms such as Twitter is a recognized tool to explore societal opinions of chronic health conditions (32). Unfortunately, schizophrenia and psychosis-related disorders are frequently mischaracterized pejoratively over Twitter (33–36). In fact, a previous study found that school shooting was among the hashtags most frequently associated with psychosis, which shows that there are still many people who mistakenly associate psychosis with aggressiveness or violence (31). This association of negative hashtags does not occur in other physical illnesses such as breast cancer or diabetes, nor in other mental illnesses such as Hikikomori (37). Furthermore, in this study, we have found that antipsychotic medications are often trivialized in tweets. Collectively, Twitter data shows that patients don't just suffer from psychosis as antipsychotic treatments are also the targets of negative feelings and judgments by Twitter users, further demonstrating the persistence of social stigma toward schizophrenia and its treatment (38–41). This experience of stigmatizing attitudes against people with schizophrenia may as a result be internalized, leading to “self-stigma” that contributes to poor patient adherence to treatment (42, 43).

A comparative analysis of the prevalence of psychosis and the number of tweets posted related to antipsychotic medications, contrasted with those referencing treatment received for other chronic diseases, supports the notion of considerable interest in antipsychotic medications among the Twitter community (44). Interestingly, our results show that patients with schizophrenia are the most common users posting content about antipsychotic medications. These results contrast with the findings reported in research describing other medical diseases mentioned on Twitter (45). Several reasons may explain this higher use of Twitter by people living with schizophrenia. First, the anonymity provided by this social media platform may favor use by persons suffering from stigmatization. Secondly, the difficulty in personal communication that these patients exhibit is mitigated through their online interactions. Third, easy accessibility to Twitter and facility in posting content may also be involved in the use of this platform by people living with schizophrenia who otherwise might not possess the willingness and confidence to engage with others in person.

In addition, social media appears to be especially valuable for monitoring the treatment experiences of individuals with psychotic related disorders who frequently use online platforms to engage with people facing similar struggles (46, 47). Our data shows that patients posted tweets related to specific areas of clinical interest stemming from antipsychotic treatment, namely sedation, sexual dysfunction, mood, and anxiety. In fact, sexual dysfunction is common with antipsychotic treatment although its frequency varies among studies. For example, a 2011 meta-analysis found that around half of those patients taking clozapine, olanzapine, and risperidone reported sexual side effects, while those using aripiprazole, quetiapine, and ziprasidone experienced lower rates (48). However, other clinical trials have reported even lower frequencies of sexual dysfunction. These differences may be due in part to patients' reluctance to report sexual side effects during in-person interviews (49). In contrast, from our Twitter data, sexual dysfunction was one of the most discussed topics, which reinforces the notion of the platform as a resource that, as a result of its particular characteristics, can better serve to facilitate patients' disclosure of sensitive, potentially embarrassing information. The meta-analysis indicated above also found that among patients who experienced sexual dysfunction secondary to an antipsychotic medication, switching to aripiprazole was found to be the most common solution (50). Interestingly, aripiprazole was the antipsychotic that accounted for the most tweets related to sexual dysfunction.

Patients with schizophrenia have higher rates of depressive and anxiety disorders than the general population (51). Noticeably, this issue has been discussed more frequently by the patients themselves than by relatives or friends, health professionals and health institutions. This is probably due to the fact that patients are the ones most aware of these particular symptoms. On the other hand, we found that patients posted less about cognitive complaints than did their relatives or friends, suggesting that patients suffering from cognitive deterioration are often less aware of their condition and less prone to using Twitter. These findings also point to patients' psychopathologies influencing the type of content they publish over social media (52, 53).

Furthermore, the relatively small number of tweets concerning metabolic disturbances posted by patients with schizophrenia is worth highlighting. Psychotic disorders are often associated with altered glucose homeostasis, insulin resistance, hyperlipidemia, and hypertension (54, 55). This is notable because resultant cardiovascular diseases are largely responsible for the shorter life expectancy of people with schizophrenia, which is reduced by more than a decade when compared with that of the general population (54, 55). Our observation of the limited interest in metabolic disturbances shown by patients is consistent with previous studies reporting that people with schizophrenia often possess other risk factors for cardiovascular disease, in addition to the use of antipsychotic medications, including a sedentary lifestyle, a poor diet and smoking (56, 57). Thus, our results emphasize an insufficient awareness of healthy habits by these patients (58). Additionally, it is troubling that neither health professionals nor health institutions have dedicated much attention to the promotion of cardiovascular health, despite metabolic disturbances being responsible for the excessive mortality of these patients (59).

Among the Twitter community, we also investigated the interest generated by tweets related to specific antipsychotic medications. We used the number of retweets and likes generated by each tweet as our standard of measure (37). Our results showed that, with regards to user type, health institutions obtained the highest retweet-to-tweet ratio. Being that they are usually very influential in the medical field, health institutions tend to have a greater number of followers than do personal accounts (60). This trend reflects the importance of having health institutions and professionals involved in health conversations since patient education is the first step in treatment effectiveness, a fact that Twitter users appear to appreciate. In regard to content, those tweets asking for or offering help were the ones most retweeted, further reinforcing the notion of Twitter serving primarily as a community of users (61). Finally, concerning specific medications, the ones that generated the most interest were aripiprazole, levomepromazine, and haloperidol. These results perhaps may be explained by the fact that Twitter is an international platform, as evidenced by the high use of aripiprazole in Europe and the United States, while levomepromazine and haloperidol are commonly employed in other parts of the world for the treatment of schizophrenia. In fact, a majority of tweets, most notably from South America, asked for assistance in acquiring these medications. Probably for their connection to treatment, levomepromazine, and haloperidol were among the two most retweeted and liked medications.

Previous research has suggested that it may be in the best interest of health care providers and the pharmaceutical industry to focus on disease diagnosis and treatment (62, 63). Additionally, it has been noted that some companies have been especially active in promoting the benefits of their products over social media (64, 65). In fact, the food and beverage industries have been increasingly promoting their brands over social media platforms, as well as utilizing posts to advertise them (66). However, according to our results, only a small percentage of the tweets studied related to antipsychotic medications promoted commercial activities. Moreover, paliperidone, despite being one of the latest drugs launched on the market, accounted for only a small number of tweets. As well, the content that obtained the highest retweet-to-tweet ratio was that related to either the asking for or offering of help. These results suggest that Twitter is frequented by users participating in conversations related to antipsychotic medications for the primary purpose of seeking out information and support rather than looking for commercial opportunities.

This study has some limitations. First, since Twitter users tend to be younger than the general population, our findings may not pertain to older age ranges (67, 68). Indeed, younger patients in the earlier stages of psychotic disorders are generally more active, suffer less cognitive impairment and are more likely to engage over social media. Secondly, we were unable to examine how clinical characteristics such as symptom severity, illness duration or cognitive dysfunction found in individuals with psychosis influenced the content of their social media posts due to a lack of psychiatric evaluation. Third, the codebook design and text analysis we used imply a degree of subjectivity. However, this methodology is consistent with previous medical research studies on Twitter and could be applied to assorted topics by various authors (69–71). Fourth, among the list of keywords we included both generic names and brand names but those tweets that included spelling mistakes might have been left out.

Our results highlight the potential to leverage social media for a better understanding of patients suffering from schizophrenia and their treatment in a manner that is more comprehensive, one that not only includes health care providers and health institutions but also family members, friends, and other social media users. Although guidelines recommend assessing the efficacy of, adherence to and tolerability toward treatment during medical consultations, in the treatment of a patient with schizophrenia, one's individual environment beyond the confines of a doctor's office is extremely important, especially as it can frequently extend to include other influences, many of which are found on social media and are worth analyzing due to the broadened perspective they can offer.

The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.

The studies involving human participants were reviewed and approved by the Research Ethics Committee of the University of Alcala (OE 14_2020). Written informed consent for participation was not required for this study in accordance with the national legislation and the institutional requirements.

MAA-M, JQ, and MÁ-M: conceptualization, validation, and resources. MAA-M, CD-V, JS-V, LA, RR-J, JQ, and MÁ-M: methodology and data curation. MAA-M, CD-V, JS-V, LA, JG, RS-B, FM, MO, GL, RR-J, JQ, and MÁ-M: formal analysis, investigation writing—original draft preparation, and writing—review and editing. JQ and MAA-M: supervision. MÁ-M: project administration and funding acquisition. All authors have read and agreed to the published version of the manuscript.

This work was partially supported by grants from the Fondo de Investigación de la Seguridad Social, the Instituto de Salud Carlos III (PI18/01726) (Spain), the Programa de Actividades de I+D de la Comunidad de Madrid en Biomedicina (B2017/BMD-3804), Madrid (Spain), and Helekulani SL.

JS-V was employed by IBM. RR-J has been a consultant for, spoken at events of, or received grants from the Instituto de Salud Carlos III, the Fondo de Investigación Sanitaria (FIS), the Centro de Investigación Biomédica en Red de Salud Mental (CIBERSAM), the Madrid Regional Government (S2010/BMD-2422 AGES, S2017/BMD-3740), JanssenCilag, Lundbeck, Otsuka, Pfizer, Ferrer, Juste, Takeda, Exeltis, Casen-Recordati, and Angelini. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

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