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BackgroundLong COVID—a condition with persistent symptoms post COVID-19 infection—is the first illness arising from social media. In France, the French hashtag #ApresJ20 described symptoms persisting longer than 20 days after contracting COVID-19. Faced with a lack of recognition from medical and official entities, patients formed communities on social media and described their symptoms as long-lasting, fluctuating, and multisystemic. While many studies on long COVID relied on traditional research methods with lengthy processes, social media offers a foundation for large-scale studies with a fast-flowing outburst of data. ObjectiveWe aimed to identify and analyze Long Haulers’ main reported symptoms, symptom co-occurrences, topics of discussion, difficulties encountered, and patient profiles. MethodsData were extracted based on a list of pertinent keywords from public sites (eg, Twitter) and health-related forums (eg, Doctissimo). Reported symptoms were identified via the MedDRA dictionary, displayed per the volume of posts mentioning them, and aggregated at the user level. Associations were assessed by computing co-occurrences in users’ messages, as pairs of preferred terms. Discussion topics were analyzed using the Biterm Topic Modeling; difficulties and unmet needs were explored manually. To identify patient profiles in relation to their symptoms, each preferred term’s total was used to create user-level hierarchal clusters. ResultsBetween January 1, 2020, and August 10, 2021, overall, 15,364 messages were identified as originating from 6494 patients of long COVID or their caregivers. Our analyses revealed 3 major symptom co-occurrences: asthenia-dyspnea (102/289, 35.3%), asthenia-anxiety (65/289, 22.5%), and asthenia-headaches (50/289, 17.3%). The main reported difficulties were symptom management (150/424, 35.4% of messages), psychological impact (64/424,15.1%), significant pain (51/424, 12.0%), deterioration in general well-being (52/424, 12.3%), and impact on daily and professional life (40/424, 9.4% and 34/424, 8.0% of messages, respectively). We identified 3 profiles of patients in relation to their symptoms: profile A (n=406 patients) reported exclusively an asthenia symptom; profile B (n=129) expressed anxiety (n=129, 100%), asthenia (n=28, 21.7%), dyspnea (n=15, 11.6%), and ageusia (n=3, 2.3%); and profile C (n=141) described dyspnea (n=141, 100%), and asthenia (n=45, 31.9%). Approximately 49.1% of users (79/161) continued expressing symptoms after more than 3 months post infection, and 20.5% (33/161) after 1 year. ConclusionsLong COVID is a lingering condition that affects people worldwide, physically and psychologically. It impacts Long Haulers’ quality of life, everyday tasks, and professional activities. Social media played an undeniable role in raising and delivering Long Haulers’ voices and can potentially rapidly provide large volumes of valuable patient-reported information. Since long COVID was a self-titled condition by patients themselves via social media, it is imperative to continuously include their perspectives in related research. Our results can help design patient-centric instruments to be further used in clinical practice to better capture meaningful dimensions of long COVID.

BackgroundMonitoring social media has been shown to be a useful means to capture patients’ opinions and feelings about medical issues, ranging from diseases to treatments. Health-related quality of life (HRQoL) is a useful indicator of overall patients’ health, which can be captured online. ObjectiveThis study aimed to describe a social media listening algorithm able to detect the impact of diseases or treatments on specific dimensions of HRQoL based on posts written by patients in social media and forums. MethodsUsing a web crawler, 19 forums in France were harvested, and messages related to patients’ experience with disease or treatment were specifically collected. The SF-36 (Short Form Health Survey) and EQ-5D (Euro Quality of Life 5 Dimensions) HRQoL surveys were mixed and adapted for a tailored social media listening system. This was carried out to better capture the variety of expression on social media, resulting in 5 dimensions of the HRQoL, which are physical, psychological, activity-based, social, and financial. Models were trained using cross-validation and hyperparameter optimization. Oversampling was used to increase the infrequent dimension: after annotation, SMOTE (synthetic minority oversampling technique) was used to balance the proportions of the dimensions among messages. ResultsThe training set was composed of 1399 messages, randomly taken from a batch of 20,000 health-related messages coming from forums. The algorithm was able to detect a general impact on HRQoL (sensitivity of 0.83 and specificity of 0.74), a physical impact (0.67 and 0.76), a psychic impact (0.82 and 0.60), an activity-related impact (0.73 and 0.78), a relational impact (0.73 and 0.70), and a financial impact (0.79 and 0.74). ConclusionsThe development of an innovative method to extract health data from social media as real time assessment of patients’ HRQoL is useful to a patient-centered medical care. As a source of real-world data, social media provide a complementary point of view to understand patients’ concerns and unmet needs, as well as shedding light on how diseases and treatments can be a burden in their daily lives.

BackgroundAtopic dermatitis (AD) is a chronic, pruritic, inflammatory disease that occurs most frequently in children but also affects many adults. Social media have become key tools for finding and disseminating medical information. ObjectiveThe aims of this study were to identify the main themes of discussion, the difficulties encountered by patients with respect to AD, the impact of the pathology on quality of life (QoL; physical, psychological, social, or financial), and to study the perception of patients regarding their treatment. MethodsA retrospective study was carried out by collecting social media posts in French language written by internet users mentioning their experience with AD, their QoL, and their treatments. Messages related to AD discomfort posted between July 1, 2010, and October 23, 2020, were extracted from French-speaking publicly available online forums. Automatic and manual extractions were implemented to create a general corpus and 2 subcorpuses depending on the level of control of the disease. ResultsA total of 33,115 messages associated with AD were included in the analysis corpus after extraction and cleaning. These messages were posted by 15,857 separate web users, most of them being women younger than 40 years. Tips to manage AD and everyday hygiene/treatments were among the most discussed topics for controlled AD subcorpus, while baby-related topics and therapeutic failure were among the most discussed topics for insufficiently controlled AD subcorpus. QoL was discussed in both subcorpuses with a higher proportion in the controlled AD subcorpus. Treatments and their perception were also discussed by web users. ConclusionsMore than just emotional or peer support, patients with AD turn to online forums to discuss their health. Our findings show the need for an intersection between social media and health care and the importance of developing new approaches such as the Atopic Dermatitis Control Tool, which is a patient-related disease severity assessment tool focused on patients with AD.

BackgroundIndividuals frequently turning to social media to discuss medical conditions and medication, sharing their experiences and information and asking questions among themselves. These online discussions can provide valuable insights into individual perceptions of medical treatment, and increasingly, studies are focusing on the potential use of this information to improve health care management. ObjectiveThe objective of this infodemiology study was to identify social media posts mentioning paracetamol-containing products to develop a better understanding of patients’ opinions and perceptions of the drug. MethodsPosts between January 2003 and March 2019 containing at least one mention of paracetamol were extracted from 18 French forums in May 2019 with the use of the Detec’t (Kap Code) web crawler. Posts were then analyzed using the automated Detec’t tool, which uses machine learning and text mining methods to inspect social media posts and extract relevant content. Posts were classified into groups: Paracetamol Only, Paracetamol and Opioids, Paracetamol and Others, and the Aggregate group. ResultsOverall, 44,283 posts were analyzed from 20,883 different users. Post volume over the study period showed a peak in activity between 2009 and 2012, as well as a spike in 2017 in the Aggregate group. The number of posts tended to be higher during winter each year. Posts were made predominantly by women (14,897/20,883, 71.34%), with 12.00% (2507/20,883) made by men and 16.67% (3479/20,883) by individuals of unknown gender. The mean age of web users was 39 (SD 19) years. In the Aggregate group, pain was the most common medical concept discussed (22,257/37,863, 58.78%), and paracetamol risk was the most common discussion topic, addressed in 20.36% (8902/43,725) of posts. Doliprane was the most common medication mentioned (14,058/44,283, 31.74%) within the Aggregate group, and tramadol was the most commonly mentioned drug in combination with paracetamol in the Aggregate group (1038/19,587, 5.30%). The most common unapproved indication mentioned within the Paracetamol Only group was fatigue (190/616, with 16.32% positive for an unapproved indication), with reference to dependence made by 1.61% (136/8470) of the web users, accounting for 1.33% (171/12,843) of the posts in the Paracetamol Only group. Dependence mentions in the Paracetamol and Opioids group were provided by 6.94% (248/3576) of web users, accounting for 5.44% (342/6281) of total posts. Reference to overdose was made by 245 web users across 291 posts within the Paracetamol Only group. The most common potential adverse event detected was nausea (306/12843, 2.38%) within the Paracetamol Only group. ConclusionsThe use of social media mining with the Detec’t tool provided valuable information on the perceptions and understanding of the web users, highlighting areas where providing more information for the general public on paracetamol, as well as other medications, may be of benefit.

BackgroundGastrointestinal (GI) discomfort is prevalent and known to be associated with impaired quality of life. Real-world information on factors of GI discomfort and solutions used by people is, however, limited. Social media, including online forums, have been considered a new source of information to examine the health of populations in real-life settings. ObjectiveThe aims of this retrospective infodemiology study are to identify discussion topics, characterize users, and identify perceived determinants of GI discomfort in web-based messages posted by users of French social media. MethodsMessages related to GI discomfort posted between January 2003 and August 2018 were extracted from 14 French-speaking general and specialized publicly available online forums. Extracted messages were cleaned and deidentified. Relevant medical concepts were determined on the basis of the Medical Dictionary for Regulatory Activities and vernacular terms. The identification of discussion topics was carried out by using a correlated topic model on the basis of the latent Dirichlet allocation. A nonsupervised clustering algorithm was applied to cluster forum users according to the reported symptoms of GI discomfort, discussion topics, and activity on online forums. Users’ age and gender were determined by linear regression and application of a support vector machine, respectively, to characterize the identified clusters according to demographic parameters. Perceived factors of GI discomfort were classified by a combined method on the basis of syntactic analysis to identify messages with causality terms and a second topic modeling in a relevant segment of phrases. ResultsA total of 198,866 messages associated with GI discomfort were included in the analysis corpus after extraction and cleaning. These messages were posted by 36,989 separate web users, most of them being women younger than 40 years. Everyday life, diet, digestion, abdominal pain, impact on the quality of life, and tips to manage stress were among the most discussed topics. Segmentation of users identified 5 clusters corresponding to chronic and acute GI concerns. Diet topic was associated with each cluster, and stress was strongly associated with abdominal pain. Psychological factors, food, and allergens were perceived as the main causes of GI discomfort by web users. ConclusionsGI discomfort is actively discussed by web users. This study reveals a complex relationship between food, stress, and GI discomfort. Our approach has shown that identifying web-based discussion topics associated with GI discomfort and its perceived factors is feasible and can serve as a complementary source of real-world evidence for caregivers.

BackgroundImmune checkpoint inhibitors (ICIs) are increasingly used to treat several types of tumors. Impact of this emerging therapy on patients’ health-related quality of life (HRQoL) is usually collected in clinical trials through standard questionnaires. However, this might not fully reflect HRQoL of patients under real-world conditions. In parallel, users’ narratives from social media represent a potential new source of research concerning HRQoL. ObjectiveThe aim of this study is to assess and compare coverage of ICI-treated patients’ HRQoL domains and subdomains in standard questionnaires from clinical trials and in real-world setting from social media posts. MethodsA retrospective study was carried out by collecting social media posts in French language written by internet users mentioning their experiences with ICIs between January 2011 and August 2018. Automatic and manual extractions were implemented to create a corpus where domains and subdomains of HRQoL were classified. These annotations were compared with domains covered by 2 standard HRQoL questionnaires, the EORTC QLQ-C30 and the FACT-G. ResultsWe identified 150 users who described their own experience with ICI (89/150, 59.3%) or that of their relative (61/150, 40.7%), with 137 users (91.3%) reporting at least one HRQoL domain in their social media posts. A total of 8 domains and 42 subdomains of HRQoL were identified: Global health (1 subdomain; 115 patients), Symptoms (13; 76), Emotional state (10; 49), Role (7; 22), Physical activity (4; 13), Professional situation (3; 9), Cognitive state (2; 2), and Social state (2; 2). The QLQ-C30 showed a wider global coverage of social media HRQoL subdomains than the FACT-G, 45% (19/42) and 29% (12/42), respectively. For both QLQ-C30 and FACT-G questionnaires, coverage rates were particularly suboptimal for Symptoms (68/123, 55.3% and 72/123, 58.5%, respectively), Emotional state (7/49, 14% and 24/49, 49%, respectively), and Role (17/22, 77% and 15/22, 68%, respectively). ConclusionsMany patients with cancer are using social media to share their experiences with immunotherapy. Collecting and analyzing their spontaneous narratives are helpful to capture and understand their HRQoL in real-world setting. New measures of HRQoL are needed to provide more in-depth evaluation of Symptoms, Emotional state, and Role among patients with cancer treated with immunotherapy.