scholarly journals Mapping and Modeling of Discussions Related to Gastrointestinal Discomfort in French-Speaking Online Forums: Results of a 15-Year Retrospective Infodemiology Study

10.2196/17247 ◽  
2020 ◽  
Vol 22 (11) ◽  
pp. e17247
Author(s):  
Florent Schäfer ◽  
Carole Faviez ◽  
Paméla Voillot ◽  
Pierre Foulquié ◽  
Matthieu Najm ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Media ◽  
Abdominal Pain ◽  
Real World ◽  
Syntactic Analysis ◽  
Support Vector ◽  
Online Forums ◽  
Web Based ◽  
French Speaking

Background Gastrointestinal (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. Objective The 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. Methods Messages 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. Results A 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. Conclusions GI 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.

scholarly journals Mapping and Modeling of Discussions Related to Gastrointestinal Discomfort in French-Speaking Online Forums: Results of a 15-Year Retrospective Infodemiology Study (Preprint)

2019 ◽  
Author(s):  
Florent Schäfer ◽  
Carole Faviez ◽  
Paméla Voillot ◽  
Pierre Foulquié ◽  
Matthieu Najm ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Media ◽  
Abdominal Pain ◽  
Real World ◽  
Syntactic Analysis ◽  
Support Vector ◽  
Online Forums ◽  
Web Based ◽  
French Speaking

BACKGROUND Gastrointestinal (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. OBJECTIVE The 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. METHODS Messages 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. RESULTS A 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. CONCLUSIONS GI 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.

Social Media Platforms Listening Study on Atopic Dermatitis: Quantitative and Qualitative Findings. (Preprint)

2021 ◽  
Author(s):  
Paméla Voillot ◽  
Brigitte Riche ◽  
Michel Portafax ◽  
Pierre Foulquié ◽  
Anaïs Gedik ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Media ◽  
Atopic Dermatitis ◽  
Medical Information ◽  
Online Forums ◽  
Internet Users ◽  
French Speaking ◽  
Social Media Platforms ◽  
The Impact

BACKGROUND Atopic 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. OBJECTIVE To identify the main themes of discussion, the difficulties encountered by patients with respect to atopic dermatitis and the impact of the pathology on quality of life (physical, psychological, social, or financial), but also to study the perception of patients regarding their treatment. METHODS A retrospective study was carried out by collecting social media posts in French language written by internet users mentioning their experience with atopic dermatitis, their quality of life 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 two sub-corpuses depending on the control of the disease. RESULTS A 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 eczema and everyday hygiene/treatments were among the most discussed topics for Controlled AD sub-corpus, while baby-related topics and therapeutic failure were among the most discussed topics for Insufficiently Controlled AD sub-corpus. Quality of life was discussed in both sub-corpuses with a higher proportion in the Controlled AD sub-corpus. Treatments and their perception were also discussed by web users. CONCLUSIONS More than just emotional or peer support, AD patients 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 Atopic Dermatitis Control Tool (ADCT) focused on patients with AD. CLINICALTRIAL Not applicable (not a trial)

scholarly journals Use of Social Media in the Assessment of Relative Effectiveness: Explorative Review With Examples From Oncology (Preprint)

2017 ◽  
Author(s):  
Rachel R.J. Kalf ◽  
Amr Makady ◽  
Renske M.T. ten Ham ◽  
Kim Meijboom ◽  
Wim G. Goettsch ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Media ◽  
Adverse Events ◽  
Real World ◽  
Relative Effectiveness ◽  
Health Data ◽  
Real World Data ◽  
World Data ◽  
Effectiveness Assessment

BACKGROUND An element of health technology assessment constitutes assessing the clinical effectiveness of drugs, generally called relative effectiveness assessment. Little real-world evidence is available directly after market access, therefore randomized controlled trials are used to obtain information for relative effectiveness assessment. However, there is growing interest in using real-world data for relative effectiveness assessment. Social media may provide a source of real-world data. OBJECTIVE We assessed the extent to which social media-generated health data has provided insights for relative effectiveness assessment. METHODS An explorative literature review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines to identify examples in oncology where health data were collected using social media. Scientific and grey literature published between January 2010 and June 2016 was identified by four reviewers, who independently screened studies for eligibility and extracted data. A descriptive qualitative analysis was performed. RESULTS Of 1032 articles identified, eight were included: four articles identified adverse events in response to cancer treatment, three articles disseminated quality of life surveys, and one study assessed the occurrence of disease-specific symptoms. Several strengths of social media-generated health data were highlighted in the articles, such as efficient collection of patient experiences and recruiting patients with rare diseases. Conversely, limitations included validation of authenticity and presence of information and selection bias. CONCLUSIONS Social media may provide a potential source of real-world data for relative effectiveness assessment, particularly on aspects such as adverse events, symptom occurrence, quality of life, and adherence behavior. This potential has not yet been fully realized and the degree of usefulness for relative effectiveness assessment should be further explored.

Impact of Atopic Dermatitis Lesion Location on Quality of Life in Adult Patients in a Real-world Study

2020 ◽  
Vol 19 (10) ◽  
pp. 943-948
Author(s):  
Peter Lio ◽  
Andreas Wollenberg ◽  
Jacob Thyssen ◽  
Evangeline Pierce ◽  
Maria Rueda ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Atopic Dermatitis ◽  
Real World ◽  
Adult Patients ◽  
Lesion Location

scholarly journals The Parkinson’s Real-World Impact Assessment (PRISM) Study: A European Survey of the Burden of Parkinson’s Disease in Patients and their Carers

2021 ◽  
pp. 1-15
Author(s):  
Eduardo Tolosa ◽  
Georg Ebersbach ◽  
Joaquim J. Ferreira ◽  
Olivier Rascol ◽  
Angelo Antonini ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Impact Assessment ◽  
Real World ◽  
European Countries ◽  
Life Questionnaire ◽  
Motor Symptoms ◽  
Non Motor Symptoms

Background: A greater understanding of the everyday experiences of people with Parkinson’s disease (PD) and their carers may help improve clinical practice. Objective: The Parkinson’s Real-world Impact assesSMent (PRISM) study evaluated medication use, health-related quality of life (HRQoL) and the use of healthcare resources by people with PD and their carers. Methods: PRISM is an observational cross-sectional study, in which people with PD and their carers completed an online survey using structured questionnaires, including the Parkinson’s Disease Quality of Life Questionnaire (PDQ-39), Non-Motor Symptoms Questionnaire (NMSQuest) and Zarit Burden Interview (ZBI). Results: Data were collected from 861 people with PD (mean age, 65.0 years; mean disease duration, 7.7 years) and 256 carers from six European countries. People with PD reported a large number of different co-morbidities, non-motor symptoms (mean NMSQuest score, 12.8), and impaired HRQoL (median PDQ-39 summary score, 29.1). Forty-five percent of people with PD reported at least one impulse control behaviour. Treatment patterns varied considerably between different European countries. Levodopa was taken in the last 12 months by 85.9% of participants, and as monotherapy by 21.8% . Carers, who were mostly female (64.8%) and the partner/spouse of the person with PD (82.1%), reported mild to moderate burden (mean ZBI total score, 26.6). Conclusions: The PRISM study sheds light on the lives of people with PD and those who care for them, re-emphasising the many challenges they face in everyday life. The study also provides insights into the current treatment of PD in Europe.

scholarly journals Intestinal barrier dysfunction in irritable bowel syndrome: a systematic review

2021 ◽  
Vol 14 ◽  
pp. 175628482199358
Author(s):  
Nikita Hanning ◽  
Adam L. Edwinson ◽  
Hannah Ceuleers ◽  
Stephanie A. Peters ◽  
Joris G. De Man ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Irritable Bowel Syndrome ◽  
Abdominal Pain ◽  
Barrier Function ◽  
Significant Proportion ◽  
Healthy Controls ◽  
Barrier Dysfunction ◽  
Irritable Bowel

Background and Aim: Irritable bowel syndrome (IBS) is a complex and heterogeneous disorder. Sensory, motor and barrier dysfunctions are the key physiological endophenotypes of IBS. Our aim is to review studies evaluating barrier dysfunction in adults and children with IBS, as well as to link those changes with IBS symptomatology and quality of life. Methods: A comprehensive and systematic review of multiple databases was performed up to March 2020 to identify studies comparing intestinal permeability in IBS patients with healthy controls. Both in vivo and in vitro studies were considered. Results: We identified 66 studies, of which 27 used intestinal probes to quantify barrier function. The prevalence of barrier dysfunction differed between PI-IBS (17–50%), IBS-D (37–62%) and IBS-C (4–25%). At a group level, permeability was increased compared with healthy controls in IBS-D (9/13 studies) and PI-IBS (4/4 studies), but only a minority of IBS-C (2/7 studies) and not in the only IBS-M study. All four studies in children with IBS demonstrated loss of barrier function. A heterogeneous set of tight junction genes were found to be altered in small and large intestines of adults with IBS, but these have not been evaluated in children. Positive associations were identified between barrier dysfunction and bowel disturbances (6/9 studies), abdominal pain (9/13 studies), overall symptom severity (1/6 studies), depression and anxiety (1/1 study) and quality of life (1/4 studies). Fecal slurry or supernatants of IBS patients were found to induce barrier disruption in animal models (5/6 studies). Conclusions: Barrier dysfunction is present in a significant proportion of adult and all pediatric IBS studies, especially in the IBS-D and PI-IBS subtype. The majority of studies indicated a positive association between loss of barrier function and symptoms such as abdominal pain and changes in the bowel function.

Therapeutic Affordances of Social Media and Associated Quality of Life Outcomes in Young Adults

2021 ◽  
pp. 089443932110329
Author(s):  
Paul Dodemaide ◽  
Mark Merolli ◽  
Nicole Hill ◽  
Lynette Joubert
Keyword(s):  
Quality Of Life ◽  
Social Media ◽  
Young Adults ◽  
Well Being ◽  
Evidence Base ◽  
Social And Emotional ◽  
Perceived Quality Of Life ◽  
Use Of Social Media ◽  
The Relationship

There is a growing body of literature exploring the general population’s use of social media for assistance in dealing with stigmatized health issues. This study presents novel research examining the relationship between social media use and young adults. It utilizes a therapeutic affordance (TA) framework. Quantitative results from this study are complemented by qualitative data. The relationships between distinct social media and their TA (a–b) are presented to highlight their potential to impact positively on social and emotional well-being outcomes. Evidence includes broad support for “connection,” “narration,” and “collaboration” TAs in this context and the relationship between the use of distinct social media and perceived quality of life (QOL) outcomes (a–c). TA provides an appropriate and valuable theoretical framework which is useful for the development of an evidence-base from the analysis of young adult’s social media usage. An analysis of the association between social media and their QOL outcomes is presented according to the TA relationship pathway (a–c–b). The adoption of a TA framework enables a nuanced analysis of significant associations between specific social media, TA, and improved QOL outcomes. This study demonstrates the significant association between social media and perceived QOL outcomes in young adults.

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