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 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.

scholarly journals The impact of atopic dermatitis on health-related quality of life in Taiwan

2021 ◽  
Author(s):  
Bing-Jun Hsieh ◽  
Dereck Shen ◽  
Chia-Jung Hsu ◽  
Tom C. Chan ◽  
Yung-Tsu Cho ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Atopic Dermatitis ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

scholarly journals Social Media and the Quality of Subjective Well-Being; Counseling Perspective in Digital Era

2018 ◽  
Author(s):  
Zadrian Ardi ◽  
Indah Sukmawati
Keyword(s):  
Social Media ◽  
Well Being ◽  
Subjective Well Being ◽  
Social Community ◽  
Digital Era ◽  
Internet Users ◽  
The Social ◽  
The World ◽  
The Impact

Various studies in the information technology revealed that there has been a change in the trend of internet use in recent years. Internet users in the world prefer to spend time accessing the internet through the social media. Social media with a variety of platforms provides special communities with their own uniqueness and allows users to share lots of content. The members involves creates a new social community with various phenomena, both positive and negative. Counselors in the millennium era are required to have the insight andknowledge that is qualified to deal with the well being conditions of individuals from activities in social media. Counselors are also required to have specific skills in providing handling with the condition of well being individuals related to the impact of activities on social media.

Using Social Media Listening to measure the impact of diseases and treatments on patients’ Health-Related Quality of Life (Preprint)

2021 ◽  
Author(s):  
Simon Renner ◽  
Tom Marty ◽  
Mickaïl Khadhar ◽  
Pierre Foulquié ◽  
Paméla Voillot ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Media ◽  
Health Related Quality ◽  
Web Crawler ◽  
Real World Data ◽  
Patient Centered ◽  
Related Quality ◽  
Health Related ◽  
The Impact

BACKGROUND Monitoring social media has been shown to be a useful mean to capture patients’ opinions and feelings about medical issues, ranging from diseases to treatments. Health-related quality of life is a useful indicator of overall patients’ health that can be captured online. OBJECTIVE This study aims to describe a Social Media Listening system which is able to detect any impact of diseases or treatments on health-related quality of life as reported in social media and forum messages written by patients. METHODS Using a web crawler, 19 health-related forums in France were harvested and messages relating a patient’s experience with a disease or a treatment were specifically collected. The algorithm was based on the two clinically validated questionnaires SF-36 and EQ-5D. Models were trained using cross-validation (a machine learning technique which obtains the best combination between different data samples) and hyperparameter optimization. Over-sampling was used to increase the infrequent dimension: after annotation, SMOTE was used to balance the proportion of the dimension among messages. RESULTS The training set was composed of 1400 messages, randomly taken from a 20 000 batch of health-related messages coming from forums. The algorithm was able to detect a general impact on health-related quality of life (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). CONCLUSIONS Real-time assessment of patients’ health-related quality of life through the use of Social Media Listening is useful to a patient-centered medical care. Social media as a source of Real World Data are a complementary point of vue to understand patients’ concerns, unmet needs and how diseases and treatments can be a burden in their daily lives. Trial Registration: Not applicable (not a trial)

The Impact of Childhood Atopic Dermatitis on Quality of Life of the Family

2000 ◽  
Vol 1 (4) ◽  
pp. 173-178 ◽  
Author(s):  
D. Staab ◽  
U. von Rüden ◽  
R. Kehrt ◽  
U. Wahn
Keyword(s):  
Quality Of Life ◽  
Atopic Dermatitis ◽  
The Family ◽  
The Impact

The impact of psychological and clinical factors on quality of life in individuals with atopic dermatitis

2004 ◽  
Vol 57 (2) ◽  
pp. 195-200 ◽  
Author(s):  
Anja Wittkowski ◽  
Helen L. Richards ◽  
Christopher E.M. Griffiths ◽  
Chris J. Main
Keyword(s):  
Quality Of Life ◽  
Atopic Dermatitis ◽  
Clinical Factors ◽  
The Impact

scholarly journals Atopic Dermatitis: Perspectives and Attitudes of Adult Patients and Affected Child Caregivers Assessed by Focus Group

2018 ◽  
Vol 76 (4) ◽  
pp. 399-408
Author(s):  
Alberto Mota
Keyword(s):  
Quality Of Life ◽  
Clinical Trials ◽  
Atopic Dermatitis ◽  
Focus Group ◽  
Adult Patients ◽  
Personal Experiences ◽  
Topical Treatments ◽  
Item Price ◽  
The Impact

Introduction: Important dimensions such as personal experiences, attitudes toward disease, its causes and treatments, are not fully addressed in clinical trials. Focus group (FG) has emerged as an interesting and valuable tool in clinical research complementing this gap. The aim of this qualitative research was to assess in both caregivers and patients dealing with atopic dermatitis (AD) their attitudes, personal experiences and perspectives toward the disease and its topical treatment as well as the impact in quality of life (QoL).Material and Methods: For discussion sessions, 10 caregivers of children and 10 adult patients were recruited. Two sessions of FG took place with 3 main themes discussed: perspectives toward AD, topical treatments and the impact in QoL. All activities were recorded in video and the discussions and notes were then transcribed to a document, followed by transcripts analysis.Results: The best descriptive feelings in the moment of diagnosis where “concern” (30%) and “quality of life” (30%) for caregivers and patients, respectively. The actual “positive” emotion or state of mind toward the disease was “overcoming” for caregivers (21%) and “control” for patients (17%). The main “negative or neutral” emotion was “fear” for caregivers (13%) and “resignation” for patients (18%), but when projecting to their child, “frustration” (19%) was the most mentioned. In relation to topical treatments, the mean global satisfaction of caregivers was high for tacrolimus (8.5/10), except in the item “price”. In the case of patients, corticosteroids received a better score (8.0/10), with exception for “tolerability/adverse effects”. Features like “preventive treatment with reduction of flares” and “free of cortisone” were important for both participants in an “ideal topical medicine” setting. All participants showed high levels of negative impact in their QoL due to AD, with 47% and 64.6% considering scores of “very much” and “a lot” of interference, respectively.Conclusion: Qualitative studies in AD by FG are scarce and to our knowledge this is the first one gathering both adult patients and caregivers. The dimensions yielded by this approach are useful to complement data retrieved from clinical trials and to drive decisions from researchers and health authorities.

scholarly journals Self-Reported Social Media Use among Ophthalmology Residents

2021 ◽  
Vol 13 (02) ◽  
pp. e195-e199
Author(s):  
Arjun Watane ◽  
Hasenin Al-khersan ◽  
Meghana Kalavar ◽  
Bilal Ahmed ◽  
Michael Venincasa ◽  
...  
Keyword(s):  
Social Media ◽  
Online Survey ◽  
Medical Information ◽  
Training Programs ◽  
Media Use ◽  
Social Media Use ◽  
Account Information ◽  
Physician Relationship ◽  
The Impact

Abstract Objective To assess ophthalmology trainees' self-reported use of and attitudes toward social media. Methods An online survey was distributed by email to ophthalmology residency applicants of the Bascom Palmer Eye Institute between September 2016 and January 2020. Results Of the 1,688 email recipients, the survey was filled by 208 ophthalmology trainees (12.3%). Nearly all trainees reported using social media for personal purposes (92.3%), while less than half used social media for professional purposes (43.4%). There were mixed sentiments regarding the impact of social media on the patient–physician relationship, with the majority feeling that it challenges a physician's authority (55.2%) but also empowers the patient (57.5%) and encourages shared care (92.8%). Twenty-five percent of trainees had reviewed professional social media guidelines, and most rated the quality of medical information on social media as “poor” (60.9%). There were low rates of trainees looking up patients (13.8%), providing their account information to patients (1.5%), responding to patients' messages (2.6%), following patients' accounts (2.6%), and being followed by patients (2.6%). Conclusion The majority of ophthalmology trainees are active on social media. As these trainees enter practice, ophthalmology will likely see a rise in social media use. Training programs should consider a formal social media policy that is shared with all trainees as part of their education.

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